Please note that MSAA will be closed on Friday, December 23rd and Monday, December 26th. We will be back in the office on Tuesday, December 27th.
Enjoy your holiday!
This past month, we published an article by one of our advocates, Devin Garlit, that centered around things he wished he had known about how his MS would progress upon diagnosis many years ago. In response, many of our community members affirmed not having expected many of the obstacles they have had to face since diagnosis, including cognitive and mood issues, the complex trial-and-error nature of MS treatments, the unpredictability of MS progression, as well as social and medical support, additional stress, and the need for sufficient financial planning. We wanted to share what they had to say. MS can affect everyone very differently, so not all of these themes may resonate with you, but it seems many individuals in our community have converged around a few key issues.
“The hardest thing for me to explain to friends and acquaintances is my (often) sudden need to stop engaging and seeking a place for “quiet time” in order to regain control of my thoughts and executive function. Sometimes I have to just blurt out, ‘I can’t think right now’”
“If I am overtired or overheated, my brain turns to mush. I need my husband around when I attempt new activities that require exerting energy in public. He watches over me carefully and can tell when I will need help. So, I don’t attempt challenges like bus trips or museums, or traveling to new places unless he (or some other understanding relative) is with me”
“From one person in a STEM career to another, cognitive issues are definitely the most scary for me, and my most persistent symptom (well, and fatigue … but the cognitive fog is almost like an extension of fatigue), and are probably responsible for my recent job “re-assignment” that has left me devastated beyond words”
“Stress has always been present in life, it is just how you deal with it that is important and that is something I am working on. Maybe looking for a counselor or someone who I can talk to for some tips”
“Wow can I relate, especially to the cognitive issues. I wasn’t prepared for that”
“My first brain doc was diagnosed with MS herself and had to retire. Reading this was like reading a biography of my life with MS. About to switch health insurance and consequently, will be starting over with a new neurologist. This will be my 4th brain doc”
“Yes the doctor part is true and so is the stress. I just recently changed neurologists and will probably change again next year”
“The part about the doctors is so true! You must advocate for yourself. I was seeing a neurologist that had me coming in every month! It was getting ridiculous and he didn’t seem to care how I was doing just that I was on [the same medication]”
“I was not very well informed by my neurologist when I was diagnosed. He told me to google MS and do my own research about it—that was the biggest mistake. I scared the crap out of myself”
Although MS can affect everyone differently, it is very apparent that no matter where are person is in his or her battle, there are some common things people don’t expect. Please keep sharing your stories and personal journeys with us. By sharing our experiences, we may be able to paint a clearer picture of what life may be like for those who are just beginning on their battle.
By Lauren Kovacs
Being with family and relationships are like skating on thin ice. Caution and preparation for these are something we need to do, especially near the stress of the holidays. Using some information can help us skate safely onto the pond of socialization. Having MS requires more of everything.
Like anything, we cannot “wing-it.” We cannot fly by the seat of our pants. The biggest thing to remember is to stay calm. Know your limits. Our speed is slow or “No.”
This is where knowing where the thin spots are will help. I like to know people’s personalities ahead of time, if I can. Going to family events or parties may take some personality planning. I like to know who respects the limits of my MS. Know your audience, so to speak.
Know the thin spots and stay clear. Know what situations and who is safe. This will reduce stress. Pick events that keep stress and fatigue to a minimum.
Some people you may have to physically stay away from. Other situations or people you may have to emotionally stay away from. MS is tough enough without someone commenting how his or her sister-in-law’s cousin’s friend ate something and is fine.
Attending work related parties is part of PR for my husband’s job. I always use my chair. It cuts down on fatigue so, I can stay a bit longer. I am social, but in the evenings I am exhausted and the MS “misbehaves” more. My speech is garbled so, I mostly listen. Sounding drunk at a work party is not wise. I try and eat before I go too.
Eating is very difficult for me. I can more easily refuse food, if I am not famished too. For me, it makes the gluten gods happy. I can be polite and have one or two bite size hors d’oeuvres. I don’t like to wear food in public so, I stay away from that thin ice.
If you are going to an unfamiliar place, take note of bathroom locations the minute you get there. Wear easy off clothes. When I gotta go, I gotta go now. I find thigh-high tights are easier than regular tights or hose. They are a bit drafty, but it is better than dealing with hose when now means now.
Know your limits. Don’t over party because the recovery time is not worth it. Try to stick to any diet restrictions. I mostly eat gluten free, but I allow a cookie or something. Balance for me is key. With a bit a planning, I can have that delicious gluten filled cupcake and be social. Be mindful of your limits and needs. A straw is a must and I carry an extra one in my purse. Most of all, try to enjoy the season.
Families seem to be expanding and shrinking simultaneously these days. With second and third marriages, births, in-laws and kids by marriage, the number of people I care about and am related to keeps growing. At the same time, divorce, death, living miles away and conflicting schedules reduce the number of people I spend time with in-person during the holidays.
This year I vacationed over Thanksgiving week, and I enjoyed a lot of time with family and friends while having a lot of fun. Now I’m back at home and while I’ll have plenty of parties to attend this month, I anticipate spending Christmas Day alone. Living far away from my closest family members makes it impossible for me to spend all holidays with them. I enjoy spending time with others, and I enjoy my time alone. Still, there’s something about the holidays that is tricky. If I don’t plan ahead, it can be easy to fall prey to self-pity.
In my life, I’ve experienced a couple decades of small family gatherings and another couple decades of large and wonderfully chaotic extended family holiday events. More recently I’ve experienced celebrating holidays solo, and it’s coerced me to think hard about what will allow me to enjoy the day alone. For me, I feel nurtured if I can include some time connecting with people important to me, some time outside reflecting and appreciating all of the good things in my life, and some time indulging with good food and drink.
If I’m going to be alone on a meaningful day, I try to connect with others in one or more of the following ways:
Some of the ways I’ll nurture myself include the following:
Connecting with people important to me takes some initiative. Lots of them have a busy day ahead, so it’s good to plan in advance to make sure my emotional needs met. Overall, I’ll be happy if I remember to genuinely look at the bright side, do something I love, connect with everyone I care about either during the month or on the day, and find a way to be generous. And if nothing else works, I’ll distract myself and remember tomorrow is another day.
*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/
Life was good before multiple sclerosis. I had great friends. We would spend time together on the weekends going out to eat or bowling. In the summer we would plan hiking trips through the mountains and in the winter we would go skiing. When MS became a part of the picture, those nights out and trips dwindled. Eventually I wasn’t even being invited out anymore, they would just go without me. I wanted to scream at the top of my lungs, “I have MS, I didn’t die.”
Amazingly, you discover who your real friends are once MS becomes a part of your life. People will either stand by you and help hold you up when you are at your weakest or they will walk away. If they choose to walk away, let them. You don’t need anyone in your life pulling you down. MS is already doing a pretty good job of that already.
I have days when I find myself dealing with physical symptoms like tremors, pain, weakness, numbness, vision problems, and muscle spasms. Enough to cause me difficulties but not enough to stop me from continuing on in my day. Then there are times when everything become so intense, when the pain and weakness grows so deep, that it bleeds over into every part of my life as it tries to get its grubby little hands on things like my thoughts and emotions.
One thing I have learned over time is that MS is not a disease you can keep to yourself. We try though… don’t we?! I know I do. I try to keep the effects of MS neatly contained in its own little space hoping to shield myself and those around me from its impending destruction, but it seems the more I try to contain it, the more it spills out. It’s kind of like trying to rake the leaves in my yard into a pile on a windy day. What a futile task. No matter how hard I try, they just won’t stay where I put them.
Regardless of what anyone thinks, we need people, especially when living with a chronic illness and even more so at this time of year. It’s a time when the weather is unforgiving, parties don’t cooperate with our MS limitations, and depression has this sneaky little way of creeping into our lives.
It’s amazing the things we have to consider when receiving an invitation. Is the location accessible? Will the wheels on my walker or wheelchair leave wintry slush tracks on someone’s nice carpet? Will my body play nice? Will I be able to manage the crowds and traffic? Will my finances be stretched too thin, above and beyond any past due medical bills? Will fatigue hit hard keeping me from being a part of the fun? Will people understand my decision to go home early or that I had to cancel plans last minute? Will they even invite me in the first place?
Real friends get it, though. I was once told, “You can count your true friends on one hand and sometimes on one finger.” How true is that?
I know it’s not always easy to do, but be determined to fill the days ahead with the warmth of a few close friends. It really does brighten the gloomy winter days. If you can’t get out, invite someone over for a special movie night complete with pizza and popcorn or even Skype with someone you haven’t seen in a while. Sometimes something as simple as a text message back and forth with someone you haven’t heard from in a long time can give you a smile that lasts for days.
From one friend to another: do your best to find joy in the wintry cold mix and always remember just how absolutely, positively, incredibly amazing you are. I sure happen to think so.
*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.
Eggnog French Toast makes for the perfect holiday breakfast. Not only does it taste fantastic but, just like other French Toast recipes, it is easy to make. It only requires 5 ingredients! Simple and easy recipes are just what I like making during a busy holiday season!
Prep Time: 10 minutes
Cook Time: 15 minutes
Yield: About 12 slices
“We hope you enjoy our Recipe of the Month selections on MS Conversations. Just remember: these entries may not necessarily be a part of an MS-specific diet; these are simply recipes compiled from MSAA staff either from their own family recipe collection or based on recipes we think our audience would enjoy. As always, make sure to consult your doctor about any food or nutrition questions as they relate to your MS.”
By Lisa Scroggins
People who have MS are like snowflakes: they have the same diagnosis, but each one will have a unique portfolio of signs and symptoms. It’s really a bizarre feature of MS, that despite similarities, the way symptoms appear can be drastically different. Many of the symptoms are invisible to others, yet have a profound effect on the person. Even so, most folks with MS understand pretty well the weird sensations and feelings of discomfiture that each one of us experiences.
Family members operate in a similar way, in that they all have their own relationship with each of the others. Some are closer than others, and some have little to talk about. While as a person with MS, you don’t get to choose your symptoms, you can choose the people with whom you surround yourself. Most of us know that drama and conflict are burdens on our nervous systems which we can ill afford. As demyelination strips us of some important “insulation,” we have to compensate for the less-than-ideal environment that we are left with. Emotions as well as signs and symptoms all emanate from our brains, and as MS uses a lot of our reserve, we have to rethink the best use of what we’ve got. This means that on a difficult day, when symptoms are aggravating, it’s not the ideal time to drag up an old argument.
Many of us cling to notions of what the “perfect” family looks like and even subconsciously try to recreate that at special times. It’s prudent to bear in mind that emotions are likely to be running high, just because of the sentimental character of beloved holidays. Combining that with any worsening of old symptoms or the entry of new ones has explosive potential. It’s very important to protect yourself from stormy interactions if at all possible!
What I’m really trying to say, is that if you have MS, you really must be selfish at times (like the holidays) of high stress. I use the word “selfish,” but truthfully, your selfishness will pay off for the people who are closest to you. If you’re able to refuse to engage in ancient dramas, to get upset about inane things like “who should do X,” and “why don’t you do Y?”, you will have gone a long way toward preserving the quality of this time for you, and for those closest to you. I wish you all a serene, sometimes exciting, and happy time, whichever holiday you are celebrating.
It was only a sunny smile,
and little it cost in the giving,
But like morning light it scattered,
the night and made the day worth living.
F. Scott Fitzgerald
Fitzgerald is the author of my all-time favorite book and this poem that, though short, reminds me the important role that light can play. Light is not only the opposite of darkness and necessary for many of the things we routinely do, but it’s also a great symbol. This time of year we routinely hear words such as peace, joy, good will (yes I know that’s two words) and my favorite of all – Hope. Light reminds me of the hope that we can have and sometimes have to fight for. It’s not easy at times with all that the world throws at us to hold onto hope and it can be difficult to get back when it seems it’s gone. But it’s also one of the things at this time of year we think on as one year prepares to give way to another. When we start to wonder what might be.
There is this amazing festival in Thailand (northern Thailand to be more exact), called Yi Peng, where people set afloat thousands of paper sky lanterns or Khom loi and fill the night air. This festival has been adopted and is celebrated around the world including here in the US. Cities and communities around the country hold lantern festivals during the year, giving participants opportunities to not only come together to partake in and watch something breathtakingly spectacular, but also to reflect. Many people assign to their lantern some significance or importance. Maybe your lantern could symbolize turning over a new leaf or good wishes for starting down a new path. It could also stand for letting go of something you’d been holding on to, making peace with something or someone you’ve had a hard time with. Or it could symbolize your hope for yourself and those around you. Light, as Fitzgerald puts it, has the power to scatter the night and while he is specifically talking about the light a smile can bring, I’d add in that hope in it’s many forms brings forth a powerful light as well. This December, as 2016 begins to wind down, take some time to yourself to find where you can relight your hope and scatter the darkness. Maybe make today a little brighter.
If you are interested in seeing first hand one of the incredible lantern festivals and, like myself, cannot go to Thailand check out The Lantern Fest.
So the holiday season is here and for some of us that means a lot of extra time spent with family. Now for many people this is a welcome and joyous gathering; spending time with loved ones and those you may not see all year round is longed for and appreciated. For others, being with family may be a bit more stressful, so one’s strength and will can find that it’s tested more so this time of year. Now don’t get me wrong, I’m not saying that all family occasions and activities are taxing, they can be very pleasant at times, but there are those moments where we find ourselves maybe wishing we were at Ebenezer Scrooge’s house for Christmas dinner (the Ebbie we see before his change of heart, lol).
I think most of us can relate to those relatives who can bring out the worry, stress and anxiety in us—and for whom we do our best to place a smile on our face and grin and bear their remarks and actions because they come from a place of concern. I know some say that family only wants the best for us, but do they have to work so HARD at it? Tough questions, unrealistic expectations and lingering comments can be very trying to endure, especially for those coping with their own changes or challenges and expectations. No one’s arguing the fact that we do ultimately want to treasure and appreciate the moments we have with family, because we all know that special moments can be fleeting and life can be very unpredictable when it wants to be. But why do some of these moments have to be so hard sometimes? Why can’t we get through a meal or activity without that moment of discomfort because someone asks an unwelcome personal question or comments on something they don’t know anything about?
Again, I’m not saying that all family get-togethers and events bring about these types of feelings; I’m merely trying to validate that these moments do occur for some and they are not without frustration or stress. The question is; how do you approach these more interesting of family encounters, especially around the holidays? What would Ebenezer do? (The changed Ebbie at the end of the tale, that is).
MSAA is very proud to present our 2016-17 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS).
We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.
|Paula Breiner – Tamaqua, PA
About the Artist:
“I started painting last August to help strengthen my hand, to better my thinking and concentration. I haven’t drawn or painted since high school back in the 80’s. I find painting to be very relaxing and stress free, which is what an MS’er needs in their life.
I was diagnosed in 2006. My husband is my rock, I don’t know where I’d be without him. I belong to an amazing support group and we have all become family, I love and cherish each of them. We have 2 beautiful daughters and 4 amazing grandkids. I do lots of crafts with my grandkids and we all reap the rewards. I have MS, it doesn’t have me. One day at a time.”