Working on the MSAA helpline we often hear different types of client experiences when it comes to working with one’s healthcare team. Some rave about their doctors and specialists and cannot say enough good things about the care they receive. Others don’t have quite the same positive reviews in their circumstances. Continue reading
I think we can agree that life is very serious a lot of the time. We all encounter situations or predicaments that require much thoughtful attention and focus, and many moments that elicit extremely strong feelings that can get overwhelming. Life can shell out some pretty unpredictable obstacles and experiences and it’s hard not to feel overcome and bogged down with the heaviness of it. That’s why it’s so important to reap the benefits of positivity, especially humor, when we can. Because dealing with illness, loss, and change can be physically, emotionally, and mentally exhausting we have to find and take advantage of moments of joy in between. Continue reading
Can you believe that it’s already June? Time is flying and we’re heading into the summer season full steam ahead. With the way the weather changes it feels like we hardly get a spring season anymore—winter tends to lead right into summer with the blink of an eye. For some folks this time of year marks a busy travel season-making plans for trips and creating itineraries of activities. For those living with disabilities, the idea of planning a trip can be taxing; making sure travel sites are accessible, packing the appropriate necessities, organizing each route to be taken—it can be exhausting before you even head out the door! But it’s important to know that there are different resources available to help you plan your trip, so hopefully you can enjoy the journey as well as the destination.
As someone who is usually hesitant to try new things I’ve found that if you give something new a try, it could result in some really nice benefits and rewards. A few years ago I wrote about trying yoga classes for the first time, and as it turns out it’s something that has really helped my pain issues when they come on. I attend hot yoga classes, and I know for many with MS this style is not an option if heat sensitivity symptoms are an issue with the disease, but yoga in other formats can be beneficial too. It’s more about the movements and mindset it creates that can be valuable to all. Continue reading
Care partners are a vital source of support and assistance to those living with chronic illnesses like MS, and it’s important to realize that they need just as much care and support for themselves in order to maintain that role of care partner to others. Self-care often falls by the wayside as burnout and exhaustion from daily caregiving tasks overpowers all else; that is why calling out some of the crucial resources and services available to care partners is so important. In a previous post we talked about some of MSAA’s resources for care partners, so we thought it would help to expand on this to include some other types of community sources of assistance.
Offices of Aging and Disability Services:
These offices provide resources and services for caregivers that include respite care, homecare assistance and other community programs. Individuals can search by location for this office contact:
Centers for Independent Living:
These centers offer information and referral services as well as some direct programs to those living with disabilities and are a good source of information to caregivers. To find one’s nearest location they can search by state/city/county here:
ARCH National Respite Network:
Resource providing a respite services locator, funding and caregiver support contacts, webinars and publications for caregiver needs:
Family Caregiver Alliance:
Organization that does policy and advocacy work for caregiver needs; they also offer caregiver education, online support groups and links to state by state resources:
Caregiver Action Network:
An organization providing education, peer support, and resources to family caregivers across the country:
Veterans Caregiver Support:
Support resources and tools are provided to those caring for veterans. Resources are also provided for specific conditions that include MS:
As we’ve just finished a very active MS Awareness Month here at MSAA we wanted to take some time to talk about support networks and positivity for this month’s blog theme. When dealing with an illness like MS, its helps to create and focus on connections to others within the community, to know that one is not alone in what they’re experiencing. From our Ask Me Anything events in March we saw lots of similarities in what others were asking when it came to their MS symptoms and disease course. On MSAA’s Helpline we often receive calls from clients asking ‘Am I the only one who’s experienced this?’ ‘Is this normal for MS?’ ‘Does anyone else have this issue?’ And we consistently find ourselves validating all of these questions and concerns, because the fact is that individuals are not alone, as there are many others out there wondering the same things.
I think the feeling of knowing you’re not alone in a challenging experience can help to quiet the fears, concerns and anxieties that accompany it. Asking if there’s anyone else out there going through the same thing and learning that there is, can make someone feel more validated and less isolated. This is why having a support network is so vital, and not only to connect with during difficult times but also to share good times with as well. It’s comforting to vent, cry or scream in times of strife and have others listen, but it’s also important to relay positive experiences, humorous moments and celebratory occasions with those in your circle. Life will have its ups and downs as these inevitably come with the ride, so sharing in the ups when they do occur can help combat the downs. If you find yourself feeling alone and asking questions just keep in mind that you’re not, and there are others out there asking too.
MS relapses continue to be one of the most notorious conundrums within the MS space and community today, which is one reason why the MSAA has made MS Relapse Management one of the MS Awareness Month activities this March. Many individuals living with MS question their symptoms and if they relate to relapses or not on a daily basis, no matter how long they’ve been diagnosed, because this issue remains a head-scratcher to those affected. This occurs because MS relapses can be difficult to diagnose, they’re unique to each person (like many other factors with MS), and they can sometimes be pseudoexacerbations and different from a “true” relapse. Several issues can influence whether or not a true relapse is occurring, these include other illnesses or infection, heat, stress, fever, and exercise. So how do you determine what is a relapse vs. a pseudoexacerbation vs. something else? This is a question that concerns many from day to day.
For a relapse to be considered there has to be certain signs and evidence pointing to it without other factors involved like those mentioned above. Symptoms may present as a worsening or recurrence of existing symptoms and/or new symptoms and need to be present for at least 24-48 hours. This is hard for individuals to distinguish sometimes, especially if it’s a symptom they’ve had before but maybe not recently, if they’re not sure that it’s an actual symptom issue, or if it’s a symptom related to MS at all. Another question that comes up often is how long do relapse symptoms last? The length of time can vary from days to months, again making it hard to know the exact ins and outs of relapses and all they entail. These are the type of great, valid questions to ask the doctor when and if the opportunity presents itself because it’s something many face and are unsure about.
Talking to others living with MS can also help to validate some of these questions and concerns too, to gain feedback and perspective from those dealing with the same types of issues. My MSAA Community, MSAA’s online peer support forum where those affected by MS connect with their peers, is one platform that can be used for this outreach. Additional information about MS relapse management can also be found through the MSAA’s online MS Relapse Resource Center and MS Relapse Toolkit publication.
To continue the conversation about MS relapses during MS Awareness Month, MSAA will be hosting a live “Ask Me Anything” event with Annette Okai, MD, today, March 12, 2018 from 6:00 – 7:00 pm Eastern on My MSAA Community. And on Tuesday, March 13, 2018 from 8:00 – 9:00 pm Eastern the MSAA will be hosting a free Live Webinar “Helpful Tools for MS Relapse Management” featuring Elizabeth Crabtree-Hartman, MD. Be sure to join in!
So I don’t think I’m alone when I say it scares me to try new things. The idea of doing something novel and different is terrifying sometimes and causes all sorts of wonky feelings. I know it’s important to try to experience new things and to step outside of your comfort zone once in a while, but this often elicits feelings of anxiety and stress, so why is that? What is it that stops us from trying new things and reaching beyond what we’re used to doing? It can be a gamut of things, but what is it specifically?
For me I think the main issue is the fear of failure. I’m not too naïve to believe that everything is and has to be done perfectly, but it’s always been an innate expectation for me to do the things that I know well, and to thus shy away from the unknown for fear that it won’t be done right or perfectly. This may be the case for others too; the idea that we won’t succeed at or conquer something, that feelings of inadequacy will abound and really derail us from trying things again. The unknown of new things can be frightening, it’s a normal and reactive response for many to not want to try because we don’t know what’s on the other side. But you also have to think, if no one ever tried anything new, we wouldn’t have all of the wonderful things we have today. Innovations, technology, art, and music were new to its creators and inventors, and without them taking the leaps they had and diving into the unknown, we’d be lost without these treasures.
It’s surely not easy trying new things – nothing ever is that results in success and beauty and grace. But isn’t it worth it, to try that one new thing to quiet expectations and norms? To settle the fears that taint the mind and to make the decision that if you attempt something different and it doesn’t work out, that that’s ok? Fear can be overwhelming and deafening and can interfere with bold choices at times, but it’s our own insecurities that often interfere with achievement. We have to be kind and patient with ourselves long enough to experience the new and see what could have been. So what will you try?
As it turned midnight on January 1st of 2018, I think a lot of people, including myself, held hopes that this new year would bring with it more optimism and hope, especially more so than its previous 2017 counterpart which brought controversy and devastation throughout the year. Entering a new year can mean new beginnings for things and more possibilities, but most importantly, a chance to reassess what your needs are and how to fulfill them. For some this may be physical needs as it relates to the body and addressing medical issues or concerns. For others this may mean focusing on emotional or spiritual needs and how this influences day to day and self-care. No matter what the needs look like, the beginning of a new year represents another fresh start to prioritize things and to take care of you.
It’s not always easy to do this with the chaos each day can bring, but that’s why you prioritize, so certain things take precedence over others when there’s not enough time in the day for everything. It may come down to making to-do lists with tasks and goals and crossing things off one by one, or setting one specific need as a goal to focus on for the week or entire month. The method of prioritizing needs doesn’t have to be perfect and it surely won’t look the same for everyone; it’s going to be tailored to each person and what their specific needs are. But it all begins with an act of self-respect; to increase awareness of what it is that’s needed and telling yourself you deserve it.
I don’t think anyone would argue the fact that 2017 has been a pretty difficult year, to say the least. National tragedies, devastating natural disasters, political and social mayhem, and endless controversy have plagued the year and we’re not yet at its end. So it’s completely understandable if you ask yourself the question, how do I get into the holiday spirit surrounded by this mayhem? Where does one find the incentive “to be jolly” in a season that’s bookended by discord on one side, and potential hope and mystery on the other that comes with the arrival of the New Year? The answer to this can actually be found in those who surround you and the spirit that others project this time of year, you only need look for the light that cuts through the darkness.
If you want to find holiday spirit, look to children this time of year, as they carry so much light and happiness and excitement for what the holiday will bring, that it’s hard not to share in this joy with them. If religion is something of interest or that you already practice, hope can oftentimes be found through faith, especially during this season. Sometimes people just want to believe in something that’s greater than them and elicits peace. Seeing how people volunteer and donate to various causes year round but especially at the holidays also spurs feelings of joy and creates that sought after holiday spirit. It’s not always easy – life can be messy and chaotic and awful at times, but it’s looking and searching for those small signs of hope and peace that keep people moving forward and keeps holiday spirit alive. Without darkness we wouldn’t know light and how powerful it can be, so be sure to embrace it when it shines through, and let your spirit be bright.