Being diagnosed with MS can be a scary and unsure time. Lots of questions come up in the process and produce many thoughts centered around ‘what if, how, and when’ concerns. It can be overwhelming to learn about the disease too as there is so much information available on it. But there’s no right or wrong way to start educating yourself and others about the condition. And it’s important to know that it’s not something that can or has to be learned overnight. I always tell clients to have patience with themselves and to learn things as they’re comfortable doing so. Everyone is different and approaches things in their own way and time and that is ok. Below are some commonly asked questions that arise during this period for many diagnosed and their loved ones.
Can I still work?
This question comes up often as individuals consider what their future may look like with MS. It will depend upon one’s symptoms and course of their disease, but many people do continue working in some capacity with their diagnosis. Job accommodations can be asked for to help modify work schedules, tasks, and routines. Vocational Rehabilitation offices located in counties throughout the country work with individuals who need assistance in finding/maintaining employment that meets their needs when managing disease symptoms and issues. Having a conversation with the doctor can help with this too. Evaluating any changes that could be beneficial in the workplace or considering whether to and if it’s the appropriate time to retire or apply for some type of disability benefits can be discussed. It’s a very personal and tailored decision that comes with a lot of thought and input. Finding what’s right for you can take some time and deliberation so again have patience with this process too. More information about Employment and MS can be found on MSAA’s website here, https://mymsaa.org/publications/employment-and-ms/.
How do I disclose my diagnosis to others and help them understand the disease?
Again this is something that has no right or wrong answer or way of going about it. When and if you decide to disclose your MS diagnosis to others is a personal and unique decision and can be done in different ways. Letting others know right away or waiting to tell them is something each person decides based on differing factors. Like their relationships with their family and friends—whomever is in their support network, their employer and colleagues, etc. Some people will seek out and find comfort and support by telling others. While some who may not receive the same level of care from those they know may decide to wait or not disclose. For those who show interest and want to learn more about MS there are many outlets in which they can do so. Using reputable MS sources of information online, watching educational videos, listening to podcasts and webinars are just some ways. There are many avenues to educate about the disease. For the latter individuals who may not have that inner-circle support, there are several ways to find these support resources elsewhere.
Is there support available?
Yes! And in more ways than one. This is a question some folks ask hesitantly because they’re not sure if this is something they want to pursue right out of the gate. This is completely understandable. Every person’s experience with MS is different so sometimes it can be intimidating and uneasy to interact with others who may have a different course with their MS—different symptoms and varying degrees of disease progression. But this too can be something that’s uniquely approached. People can choose to connect with others as they find it necessary and feel comfortable in doing so. And if they make the decision to, there are many avenues to try. There are MS organizations, support groups, and online communities, including MSAA’s peer support forum My MSAA Community, that individuals can turn to for information and support.
One of the most crucial things to know is that you do not have to go through the diagnosis alone. Whether just diagnosed or years into its course, you don’t have to do it by yourself.
On MSAA’s Helpline we often hear questions about MS relapses and what constitutes a relapse. Individuals ask whether the symptoms they are currently experiencing are just due to their MS or if an exacerbation of symptoms may be occurring. These are great questions that warrant valid and informative responses. The challenging piece of this, on the part of the healthcare professional at times, is helping to identify a true MS relapse from a pseudoexacerbation.
To be diagnosed with a true relapse, there must be certain factors at play. Individuals will either experience new symptoms or a worsening/recurrence of existing symptoms. These acute symptoms have to be present for at least 24-48 hours, without signs of other infections or fevers. This is where it can become tricky identifying a relapse from a pseudoexacerbation. Because with the latter, one can experience a temporary worsening of symptoms without inflammation or nerve damage occurring. A pseudo flare can result from illness/infection, fever, stress, heat sensitivity and other factors.
It’s important to discuss these differences with your healthcare team so that you can better communicate if you’re feeling any changes in your symptoms. Ask your doctor what signs you should look for if a relapse may be present, and when you should reach out to their office for assistance. Talk about ways a relapse could be treated and managed if it occurs. And make a plan for what you should do if you’re not able to get in touch with your doctor’s office. Some individuals will seek emergency medical services if needed when they’re experiencing worsening symptoms. So ask your doctor if/when you should seek care in this manner. Asking questions about MS relapses can be an integral part of your overall treatment plan and follow-up care.
Throughout life there are moments that call for certain emotions and behaviors as a way to react and cope with things. There are times that call for seriousness and focus, sadness, or frustration. But there are also times that call for humor and lightheartedness. These elements can help keep you going sometimes, especially through challenging periods. Seeking out humor is a task everyone should try daily.
Some of us are fortunate to have naturally funny and humorous characters as part of our day to day lives. My husband is one of these people and can make me laugh-especially in times where I don’t want to be amused, haha. He has a knack for it, a talent that comes so easy to find humor in almost any situation. I’m grateful for the humor he adds to my life each day, even when it’s not wanted. He knows in those moments where I become too serious or overly stressed, I can probably use a good laugh to break through nerves and tensions. And he’s usually right.
I know we can’t have humor and laughter 24/7, but I think it’s important to make room for it whenever possible. There are too many obstacles, traumas and tragedies that plague the world. Be it illness, loss, or some other type of devastation—we don’t know what the next moment will bring. But amidst this we can find light, hope, and humor to manage our feelings about what we can’t control. If humor can be a way to help cope with the unimaginable, then bring on the laughs. Because at the end of the day if we can control our reactions and emotions, why not add humor into the mix.
I think it’s safe to say that this summer, so far, is shaping up to look a lot different than last years. Being in the height of the pandemic and COVID cases still on the rise at that time, the summer was just another period to get through living in a changed world. With individuals having the opportunity to be vaccinated this year, the summer months are being celebrated once again. And hopefully in a safe manner. For some this will mean getting the chance to travel again and thinking about their accessibility needs in doing so.
Traveling can be an exciting and exhilarating experience for those who enjoy it. So, making plans and preparations that will ensure the trip is a great one is an important step. For those living with a disability, having the right accessibility measures in place for travel is imperative. From the planning stages to the endpoint of the journey there are different factors to consider. The destination itself, the mode of transport, accessibility of sites and attractions, and accommodations are all elements significant to the plan. It can sound tedious and like a lot of work but making sure the trip will be safe and enjoyable is the ultimate goal.
For those making travel plans, COVID has unfortunately added another layer to the planning piece this season. Checking with destinations on their COVID policies and procedures and with the mode of transport you plan to take are additional steps now to ensure safety. If able, working with a travel agent for assistance planning your trip can help in this initial phase. For many destinations they have websites for visitors and tourists traveling to their area and offer helpful information and resources online.
If you plan to travel this summer, be sure to consider what your travel and care needs look like. Are you using a mobility device, do you need your accommodations to have specific accessibility features? Would you be traveling with medications and need documentation from your doctor? Are the sites you’re visiting accessible? What about restroom accessibility? Trails, walking paths, street and sidewalk access? Are you heat sensitive with your MS symptoms and need to think of climate? These are just some aspects to think of when making plans for your journey. It can be fun but making sure it’s also safe and accommodating for you is key.
Wishing you a safe and pleasant journey!
With Father’s Day just a few days away, it’s nice to take this time to think of all the special men in our lives. They certainly don’t need the title of dad or father to be thought of at this time of year. Especially if they hold a special place in your heart and life, no matter the type of relationship. We have fathers, grandfathers, brothers, uncles, godfathers, cousins, and friends that we are blessed to know and be surrounded by. They deserve to be recognized and celebrated, for more than just one day!
It’s a perfect time to let these special guys know what they mean to you. What you admire most about them and what you treasure about your relationship. Tell them thank you and how they’ve made your life brighter. Whether they’ve provided you with strength and courage, protection and love, or just endless support. Don’t miss out on a moment where you can express to them all that they are to you.
The day may also bring challenges for those who are mourning and remembering the men in their lives whom they’ve lost. It can be a difficult time for the men waiting and hoping to become fathers, or for those who have lost a child. But the day can be spent honoring and recalling special moments and memories too. To have faith and keep hopes that future Father’s Days may look different.
Wishing everyone a wonderful day!
She is your mother, grandmother, sister, aunt, godmother, cousin, or friend. She is a woman you have been able to rely on throughout your entire life. No matter the type of relationship, there are women we have been fortunate enough to have in our lives that care about us unconditionally. They support and motivate us to be better people and are our angels here on earth that we’re blessed to know. The women who influence our day to day should be celebrated, and Mother’s Day is a great outlet to do so.
The day doesn’t have to look a certain way either. If you’re celebrating someone who is not ‘technically’ a mother in the traditional sense, that’s perfectly fine and good! Mother’s Day is about acknowledging those who are significant to you. The women who’ve surrounded you with motherly qualities, kindness, compassion, and strength. Celebrate her. Talk to one another, visit if you’re able to, send a card or note, flowers or gift. Just saying thank you to her is a wonderful gesture.
I want to recognize that it may also be a day that is difficult for some. For those who have lost and mourned important women in their lives. Those struggling to become mothers or who have lost a child. The day may be one of remembrance and somberness at times. But it can also be a beautiful day where you can honor someone and recall fond memories. A day where you can hold onto hope that things may look brighter for future Mother’s Days to come. And to celebrate those in your life who have made a difference.
Wishing everyone a beautiful day filled with light and joy.
I think we can all agree that life has been especially heavy lately. The world turned upside down last year with the pandemic and we are still living with uncertainty and concerns daily. Stress levels have soared, and this can have lasting negative effects on one’s health. So how can we help manage our stress? There are many ways, but a fun one is through laughter.
Having a good chuckle is good for the body and the soul. You wouldn’t necessarily think that laughter could have real, significant health benefits, but it can! Especially for managing stress. Laughter helps to stimulate organs, reduce stress hormones, and relieve pain. It helps boost mood and soothe tension in the body and helps combat depression and anxiety. It’s fun to do and even something you can fake at first until it comes more naturally. There are many benefits to laughter and its skills are plentiful.
It’s important to look for humor in life wherever you can find it. Life is stressful and chaotic and finding ways to lessen the heaviness of it is key. There are many outlets to find laughter in everyday life. And making this a goal can help to reduce stress, without putting in a lot of effort. Laughing with friends and family, at media, and even at yourself can bring instant change to your attitude and demeanor. Things can get so serious a lot of the time. Finding ways to laugh and humorize situations can be just what is needed to lighten the load at times.
After reading more about laughter and its wellness benefits, I see even more truth to the phrase ‘laughter is the best medicine.’ The expression of laughter not only increases happiness and elevates mood, but it also helps connects us to others and stimulates positive thoughts and feelings. So let out a chuckle…it can do a world of good.
No secret here-life can be very unpredictable a lot of the time. It can be messy and chaotic and ever-changing. But even after a year filled with such challenge and turmoil as 2020, it’s incredible to see how resilient people are and can be. Yes, life and the changes experienced can have its ripple effects. Impacting not only physical health, but mental and emotional health as well. But it’s how people adapt and overcome these hurdles that helps foster improved wellness of the entire body.
Resiliency, among other aspects, can be an extremely powerful tool when it comes to mental health care and wellness. Learning to adapt to difficult situations and continuing to strive forward despite them helps build resilience. And the great news is-this is a skill that can be learned and taught. Whether it’s teaching yourself the skillset or working with a professional for guidance, building resilience is an important key to overall wellness.
There are different components used to help nurture resiliency, with two crucial ones being self-compassion and self-care. Being kind to ourselves and our bodies is so important for both mental and physical health. This helps to decrease issues with anxiety, stress, and depression. Practicing mindfulness, surrounding yourself with others who support you, and taking care of yourself physically are all key parts to resilience skill-building.
I think many of us would agree that taking time for ourselves and thinking about our own health and well-being usually falls towards the bottom of our daily agendas. This is something that we can all start to do better with. Because taking care of ourselves helps validate that we can take care of others around us too.
With Valentine’s Day around the corner, this time of year usually makes us think of candy hearts and bouquets of flowers and mushy love songs. But aside from the romantic relationships that usually dominate this holiday, it’s also a good time to think of the other bonds that we value and find important in life. Our connections with others are something to treasure now more than ever, so it’s nice to think of the other relationships that mean so much too. For me, I value the relationship that I am fortunate to have with my sister.
Growing up we bickered and fought just like typical siblings do. We had times where we didn’t like each other but we still loved each other cause ‘we had to’ kind of thing. But as we grew older, we started to appreciate who the other was and learned more about them. Now we look back and realize how lucky we were to have one another. Our other siblings were close in age but older, and while we were all close and grateful for that, my sister and I formed a bond that has strengthened to this day.
My sister is a wonderful mother and talks about having more children because she wants her son to have a sibling with whom he can have the same type of bond that her and I share. As our family has sadly lessened over the years, we’ve grown increasingly grateful for those we are still blessed to have, and I am thankful for her every day. She listens without judgement, loves unconditionally, and knows my quirks, fears and hopes. My sister is always there, and I would feel lost without her. She’s a fun reminder of our childhood and is someone that I can reminisce with to share memories of family and good times.
If you have a relationship in your life that you value and cherish, be sure to let that person know it. You don’t have to say it every day, but once in a while let them know that they are important to you and what your connection means. It’s nice to share this sentiment with the people in your life who matter the most.
When the countdown to New Year was upon us and the clock finally struck midnight on January 1st, I felt hopeful and optimistic about the new year ahead. Seriously, after a year like 2020 you could do nothing but believe that 2021 must be better, right? Well, we can certainly hope so!
We haven’t rid ourselves of the pandemic, but with the distribution and development of several vaccines hopefully Continue reading