Not long ago I wrote some about my first trip to see an acupuncturist. It’s a recurring trip that I genuinely look forward to and enjoy. There are lots of other areas where you can find some alternatives that can be added to what you are already doing, or in place of something. Now each alternative therapy may not work for you specifically and you should consult your physician when it comes to any radical changes to your diet, routine or the programs you adhere to. Continue reading
This month we’ve been focusing some of our entries on care partners. We often think of the individual who is diagnosed with MS or cancer or mental health but what is not as often associated are the family, friends and care partners who journey along with them. While each person’s story is of course very different and I don’t want to generalize the experience of everyone I thought it would be great to get more of a perspective from a care partner of someone living with a chronic illness. We’ll call him Tony and in addition to being a masterful golf player, jazz enthusiast and retired teacher he is also the caregiver for his wife who we’ll name Maria (west side story anyone) who has been living with a chronic illness, Parkinson’s Disease for the last decade. Tony was gracious in giving me some of his time for this.
Me: What is one thing you want others to know about being a care partner?
Tony: Oh, we’re just jumping right in! Umm, I think It’s important for people to know that it’s hard. And not just in the sense that people think of. I love my wife and I take care of her because I love her, I want her to taken care of, I’m physically able to and as old [fashioned] as it may sound I promised to be there for her in sickness and health. I know she would take care of me this way if our roles were reversed. Umm, but also being a care partner it’s hard. I know lots of couples who are no longer together and we shouldn’t shame them for that. It takes a lot to take care of someone in this way. It’s hard, you know… it’s hard.
Me: Yea, I think what you said about shame is big. We sometimes look at a spouse or a family member and ask why didn’t you stay and be there
Tony: Right, Yea. I’m in support groups with people in that boat. And I think people don’t realize how difficult it can be. The hardship it can be, mental[ly] and physically too. And it’s not usually for a lack of love that people don’t stay. Which is I guess what most people would think when they see that but it’s, it’s hard.
Me: Yeah. You mentioned support groups. Do you run one or what has that looked like for you?
Tony: I’ve been part of a couple of them. I’ve never run one…maybe I should have! But I felt lonely before getting connected to my [first] support group. When I walked in it was like having mirrors or copies of myself around. Here were these other people who understood me. Who listened not with pity but with understanding. I found a place where I could be less alone. Where I could be upset or angry and not feel bad about it. Not every support group was for me but being in those places I’ve found that I’m not alone and there are other people who are there in the same boat
Me: What was Maria getting diagnosed like for you?
Tony: It was kind of crazy. She has other members of her family who have diagnosed with it and I just didn’t think it would be her, it would be us. But it made me aware and think of a lot of things I never had before. Like what it was going to be like to take care of her and then who would take care of her if something happened to me.
Me: You always seem upbeat though.
Tony: There are days when it’s rough. But for the most part I think about the fact that I love her and she loves me and we’re in this together. She has lots she could complain about, but doesn’t… so why should I. We take it one day at a time, that’s all we can do
Being a care partner isn’t an easy thing to do and I’m sure Tony and Maria like all care partners have waves that ebb and flow. Seeking out a support group is a great way to find a group of people that can be in your corner.
I think it’s over here… or upstairs… or in the trunk… wait, did I donate that??
Lapses in memory or just general forgetfulness can happen to anyone and doesn’t have to be directly related to any one issue or associated with any diagnosis in particular. In the world of MS though, Cognition Issues, or what is sometimes referred to as Cog Fog can be a significant concern. Cognition and overall Brain Health is a complicated beast especially within the MS community. Here are some general info and tips about helping to improve cognition and overall brain function and how to build in a defense against the Cog Fog.
The Brain, The Brain…. The Center of the Chain (yes, that’s a Babysitters Club reference)
- While many factors may impact Cognition some big ones to keep in mind are Nutrition, Sleep and Stress
- A healthy diet (while there is not an MS specific diet, read balanced diet here) can help support brain function and health. Giving the body important nutrients it needs to use in cell building and repair
- Vitamin E, Omega-3 Fatty Acids and other anti-inflammatory foods have been found to impact brain function in a positive aspect
- Sleep can be hard to come by but getting proper rest may trigger your glymphatic system which essentially helps flush your central nervous system (in part your brain) of buildup and toxins
- Sleep allows your body to heal and repair cells that can help you get a fresh start on the next day
- Stress is a big one as it can trigger an increase in the activity of your sympathetic nervous system and cause inflammation which can lead to issues associated with not only your cognitive system but also your immune system
- Decreasing stress levels (easier said than done I know) can aid your body in being in a good spot defensively for illness as well as loss of attention and focus
Now none of that may be new news to you, but it’s good to be reminded that Nutrition, Sleep and Stress all play a part in our overall health and especially as it relates to brain health. So, what can you do to combat or alleviate some of the problems brought on by Cog Fog. We’ve heard some great tips from clients that they use and wanted to share
- Notes, notes and more notes: when you think of or hear important information write it down on a post-it and put them up in a spot in your home that you pass by very often such as a hallway, bathroom or near the front door
- Calendars are your friend: A large wall calendar can be purchased or if you want to be creative, drawn/painted/sketched onto a wall and similar to the notes put appointments, important dates and other information into it so you have it on hand
- You are getting very sleepy: There are a lot of theories on how much sleep you should get, generally speaking we hear that 8 hours is optimal. But in addition to this try working on a sleep cycle. Sleep cycles last approximately 90 mins and there are 5 stages that you go thru during that time. It takes on average someone 15 mins to fall asleep. So try and schedule your sleep to include not only the 90mins in each cycle but also the 15mins at the start (its an average, I know it may not work for everyone in exactly that amount of time) and set alarms to wake up at what would be the end of a sleep cycle. You’ll definitely feel the difference
- Meal planning: Seems like the whole world is on a meal plan or diet kick these days. But meal planning can be helpful when you are not only trying to have healthy meals but also when you are attempting to be intentional about implementing things like Vitamin E and Omega 3 fatty acids. Mark out a plan for your weekly meals (yes you can deviate to occasionally allow for that cheeseburger or pizza) and be intentional about incorporating healthy aspects into your diet
There are lots of other great tips to include, these are just some that we wanted to share and hope are helpful to you. Definitely share with us some of your tips and takes on helping with Brain Health. We’d love to hear them!
To continue the conversation about MS relapses during MS Awareness Month, MSAA will be hosting a live “Ask Me Anything” event with Rohit Bakshi, MD, today, March 19, 2018 from 6:00 – 7:00 pm Eastern on MSAA’s Facebook page. And throughout the week, MSAA will be hosting free in-person events across the country. Find an education event near you by visiting our Calendar of Events page.
Trying new things can be difficult. It means venturing outside of our comfort zones and, in some cases, putting ourselves in situations that can be both challenging and to be honest, frightening. But charting a course for a new terrain can also mean that we find something that we love that we would have never found otherwise or learning something about ourselves we didn’t know or just being able to check something off our list to say we tried it. No, we don’t need to try everything there is in the world… stay away from beets, they’re kinda gross and I don’t recommend getting into legal trouble, I hear it’s no fun… but in all seriousness when we take a chance outside of our usual circle we may find something that surprises us.
This year I’ve made a commitment to try something new every month. It doesn’t have to be huge, overly flashy or very expensive, but I want to continue to push myself past what I usually do and tap into somethings I have not before. This past month (I know it’s February but I haven’t done my new thing this month so go with me) the new thing I gave a try was acupuncture! Now before the Trypanophobics (having a fear of needles) in the audience run for the hills, hear me out. Acupuncture has been practiced by many cultures, often specifically associated with Chinese culture, for thousands of years. It’s a form of healing that yes, does utilize needles. But before you go grab your sewing kit and try to cure your own headache know that to become a trained acupuncturist is not just learning to not make people bleed with thin pieces of medal. It takes a study of the human body, pressure points, muscles, nerves, an awareness of the interconnectivity of pain and stimuli and a host of other factors to be able to safely and effectively administer acupuncture. I’ve had it on my list of things to try for some time and decided, heck this was the time. I did my do-diligence and researched clinics in my area and came across one in my very own neighborhood with trained and certified acupuncturist…. And away I went.
Now even though I wanted to try this out, I was still nervous which I’m sure didn’t help the strained muscles I was trying to ease to begin with. But here’s the thing… it was a great experience. The clinic, which looked more like a message parlor was welcoming and calming and the process… was painless. Well to be honest there was a pinch or two in the beginning but less than when you get your flu shot. The session was 30 minutes and honestly after 5, I forgot the needles were even there and fell asleep…that’s how relaxing it was. Now the question I’m sure somebody is asking “yeah but did it work?” Yes… and no. Immediately after I had the needles removed by my acupuncturist the pain felt eased but not gone. This I learned was normal. Similar to most things it didn’t take one day for the muscles to tense and become soar so it wouldn’t be reversed in just one session. The acupuncturist explained to me that most people come a few times within the first week or two to have their procedure done and then the spacing between visits becomes greater. Not what I was expecting, mostly because like most of you I live in a world that readily expects some things to happen quickly and on my schedule. But it did help, I woke up the next day and the treated muscles did feel less taught than usual.
So is acupuncture right for you? It might be. If you have thought about it or are interested in it I would encourage you to seek out a clinic and acupuncturist that’s right for you. Is it worth a try, definitely. It doesn’t involve medication or overly complicated procedures and can be administered in as little as 30 minutes. Is it costly, the cost is dependent on the clinic but most of the ones I found in my area worked on a sliding scale according to income. Do be sure to do your research first, ask questions of the team regarding licensing, training and to walk you thru the steps. If you are still nervous go visit the clinic. I personally enjoyed the experience and have scheduled sessions at a regular interval which I’m also enjoying. It’s something new and as a bonus is something good for me. Happy venturing!!
Oh the New Year…. Everywhere you see signs, commercials, social media posts and billboards advertising “New Year, New You.” We all make resolutions to get to the gym, cut out the junk food, meet Mrs/Mr Right, get out of debt, budget better and there is nothing wrong with any of those things!! We could all use a better budget and probably to eat less simple carbs… especially after the holidays. But this year be encouraged to not create a brand new you, but finesse the you that’s already there and Do Less or Do More. Radical changes that turn things on their heads usually tend to end in disappointing failure which can cause even the most devote of us to doubt if we are ever going to be capable of change.
But what if instead we took stock of what we wanted, were honest with ourselves…not with our best intentions but with our real selves and instead of resolutions made Less/More lists. This year I have decided to Waste Less… of not only nature’s resources but also my time and energy on things that are not good for me. I’ve decided to Judge (both myself and others) Less in order to extend grace and understanding, to be Hurt Less in that every painful situation should not derail me continuing to live my life to the best of my abilities. To Doubt Less in my abilities and talents, in my own worth and potential and to Fear Less… to let fear have it’s rightful place but not take over from me the joy and growth that new experiences and tough situations can bring forth. I also decided to Reflect More on my surroundings and my place in the world, to Care (for both myself and others) More in that it’s ultimately my responsibility to be there for myself and I can extend that care to others until they are able to do so for themselves also. I decided to Explore More and Read More of the world around me in order that I can Grow More from experience and Learn More from others. I also decided to Accept More both the things I cannot change but wish I could, the people I encounter who are who they are and my own shortcomings and missteps. I have decided to Reach Out More to others, Connect More with the community and people around me and Love More in situations that I could use or might even feel called to insert hateful words, closed ears or turned backs, to decide that in spite of everything I will Love More.
I don’t need to be a New Me in this New Year… I needed to take stock of the things most important to me, evaluate and be honest about the things and people in my life and what I want from my life in order to come to the decision that this year…. This will be the year of More and Less of what I decide to make it. So what will you make it??
Oh the Holidays!! As we celebrate the last day of Hanukah and prepare for the arrival of Jolly Old St. Nick and the start of Kwanza, it’s easy to get bogged down and mired by the dealings of the holidays. The shopping, the preparing, the work functions, community collections, the (insert your religious organization) gathering, the wrapping, the white elephants, the bows, the ribbon, the food planning, the change of planning, the cards, the out-of-town guests, the unexpected guests, the overly friendly neighbors or being the overly friendly neighbors…the list could go on forever. But we can often find in the midst of all of this that we ourselves are burnt out before the joy of the holidays even really sets in.
We can become the Grinch of our own story, looking around at all the Whos out in Whoville and internally rolling our eyes in exhaustion. I get it, I’ve been there. I found myself there recently as the calendar ticks away the days marching closer and closer to the last week of the month. Then the other day I met my own Cindy-Lou Who in the form of a manager at the biggest culprit of holiday joy stealing…the Mall. She was older and had been clearing misplaced items from shelves when we crossed paths watching two mom’s bicker over who was in line first and she said, mostly to herself but loud enough for me to hear, I love this time of year…it brings out a little nutty in all of us. Yes, you read that right…her love of this time of year came from the knowledge that we are all our craziest selves during what should be the happiest of times. I was intrigued as I am by most interesting strangers I come across and asked her why. To which she said, Why Not. She continued that there are so many things going wrong in the world, big things that she could do nothing about. That made her worry and scared for her grandkids. Things that were loud and unsettling and that she hoped she would never see again in her lifetime. But this, this was something she could step into and speak into. And she did. She walked over and politely asked the women what was going on and how she could help them. She even took one over to the customer service counter and proceeded to cash them out, speaking directly to them in a lower voice I couldn’t hear and then wish the mom a Happy Holiday. She smiled at me as she came back around the counter and said, sometimes we all need to be reminded it’s got nothing to do with the stuff. It’s just stuff, that will probably be forgotten by next year. We put so much pressure on ourselves for this and that, but it’s just stuff. Just stuff. I smiled at her and looked at the guy behind me as he proceeded to order gifts on Amazon while in line buying gifts at the mall and answering a text from his girlfriend and looking like the ghost of Christmas past. I mumbled to myself… it’s just stuff.
And not just the gifts, all of it. The preparing, the work functions, community collections, the (insert your religious organization) gathering, the wrapping, the white elephants, the bows, the ribbon, the food planning, the change of planning, the cards, the out of town guests, the unexpected guests. We shouldn’t let it get us so bahumbugged that we become the Grinch (yes I know I mixed storylines there). Don’t get bogged down and burnt out over The Stuff this year. This holiday season take a page from Dr. Seuss’ book “And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled ’till his puzzler was sore. Then the Grinch thought of something he hadn’t before. What if Christmas, he thought, doesn’t come from a store. What if Christmas, perhaps, means a little bit more”
Though it doesn’t feel like it in most of the country, Fall is officially upon us. There’s the activities and the get togethers. The smells and the lead up to… the holiday season! Arguably fall is my favorite time of year and easily also one of the most stressful. In gearing up for the pending holidays, trying to enjoy outings with loved ones and friends and preparing for the end of the year in terms of work and personal life (I’m someone who likes to file my taxes in January if I can help it to get them out of the way) I inevitably run into a wall of burnout. It’s not permanent and to be honest is totally avoidable if I just created some margin. I know, it’s easier said than done when the kids, the spouse, the job, the (insert religious organization you belong to), the neighborhood watch, the scout troop or sports team, the friends, the family…the lists go on… all need something and they need it soon. If you are anything like me you’re a doer. But doers…they need margin most of all. We have to build in safe guards and set boundaries to make sure that while we’re caring for and participating with others, we’re also monitoring and taking care of ourselves. That we don’t run into the situation that we run totally out of steam, burning the candle at all ends and find ourselves in the dark.
Like I said, it’s easier said than done but just think how much better you’d be if you weren’t laying under the desk completely done at the end of the week. So, what have I done to help create space and boundaries for myself? I have people in my life who understand my doer mentality and essentially pull the plug from time to time. They’re there and not only listen to the litany of items on my ever growing To-Do list but also challenge me and say ‘Can someone else pick up the donations from the restaurant’ ‘Who can you call to finish making the activities for the carnival’ ‘Do you need to volunteer to run another event’ and most importantly, ‘What have you done this week that’s just for you’. They ask not because they are nosy or because they are looking to judge or condemn me. No, they ask because I’ve let them in and given them permission to tap me on the shoulder when it looks like I’m headed for the red zone. And vice versa, I’m part of their team. Their team that pulls them from the edge when they’re baking for the 5th bake sale this month or about to volunteer to run the fundraiser that drove them insane last year. You should surround yourself with people who you trust to step into your life and help you keep up with the boundaries you need…not the Jones’ down the block. So how do you do it? How do you build in the buffer? Because creating space and implementing margins in our time and energy may not feel natural at first if you are a doer, but it’ll help keep you from smacking into the wall of exhaustion…and who doesn’t want that?!
“I love the man that can smile in trouble, that can gather strength from distress, and grow brave by reflection.” –Thomas Paine
There are more lines to this quote, but this first part has always stuck out to me. It struck me the first time I heard it studying Thomas Paine in school and it’s come back to me many times since. It’s simple, directive, yet weighty in connotation – I love it for that.
Every September 11th two thoughts run through my head as I start my day. I think about my childhood friend and her stepdad who lost their mother and wife in the Pentagon. Simultaneously, in that moment of grief for them and others I’m incredibly thankful that my own dad, who was at work that morning like always in the Pentagon, made it home. Today is one of those days that we all share and don’t share at the same exact time. As a country, we watched together as the day turned from a sunny Tuesday morning to a confusing Tuesday afternoon to a devastating Tuesday night. But every person will tell you an individual story of where they were and what their experience was. It’s one of those days that’s burned into our collective memories for better or worse, and if we close our eyes we can recall more details from that one day than almost any other.
For me Tuesday September 11th, 2001 was a slow motion day of disbelief in a school only about a half hour outside of DC in a Virginia town heavily populated by military families, many of whom work in the 5 sided polygon, as teachers tried and failed desperately to keep students sheltered and calm. It’s almost strange not to think back to where I was today 16 years ago when the speakers in my Algebra class cracked to life. The shaky voice of the principal came over the intercom and the school went totally silent, as if all the air had been sucked out of the building. I can still feel what it was like wandering down halls wanting to reach out to home but terrified of even picking up a phone. Seeing tears around every corner as students sat on the floor in groups or hovered in corners holding themselves to keep from breaking and leaned against lockers unable to think of what to do next.
I can close my eyes and feel myself being hugged by people who were strangers an hour before, hugged just because they knew where my dad worked. What it was like finally running home from the bus much later than normal as the stars came out and not realizing how long I’d been holding my breath till I saw my dad sitting distraught and looking lost on the couch through our open front door. Sitting with my friend in her room on the edge of her bed hugging and silently crying just a few miles from where rescue crews were working. Sitting with her on the floor of their living room as we all waited for the list of names while our parents sat silent listening to news correspondents try to formulate coherent sentiments.
I know what day it is before my alarm goes off and I even hear the news click on. Before I start my NY Times app or open my social media feed. I know what day it is because there’s a pull to it, a weight to the hours that other days don’t have. I know what day it is regardless of what day of the week it falls on because of what it means to me, to my neighbors and friends. What it means to the families of men, women and children who lost their lives and everyone who carries their memories. What it means to the service personnel who have given their lives to protect our country and those who reenlist for another tour to continue that work.
For myself, and I know so many others, today is about reflection. It’s about taking time to honor and love and gather strength, and not necessarily about never forgetting the events that happened, the events that it set in motion, or the loved ones we lost, but about remembering that the people we are given and the time that we have, however long it shall be, should mean something. About seeking out the reasons to smile in the face of troubles and allowing ourselves to grow braver and more resilient after we reflect on where we’ve been and all that’s happened. I’m reminded of that and challenged to be sure to take all that I’ve been given and make it mean something, to make it count… Let it remind you today to make yours count too.
Dear No One,
Relationships are tough. I mean, I know I’m stating the absolute obvious to you when I say that, but just hear me out. We too often think of relationships in terms of just those we date or are romantically attached to. But relationships are more than that. We have relationships with our family members, our friends – hey even total strangers we strike up a conversation with on a train platform. And they all can be taxing and draining, hard to navigate and at times annoying. They can be stressful and expensive and not just in terms of money but in emotional investment and mental space. If I’m being honest, people can be the worst. I mean really, look around and you’ll find plenty of examples of reasons why we should not like people. Just look at what they do to each other and you aren’t immune if you know someone. People can hurt the people we know just as much if not more than the people we don’t. You see what I mean, relationships… they’re totally insane!
But then things happen like the other day when it was raining and I stopped at a light and I was annoyed by the day and by the rain and by just everything and I caught out of the passenger window a woman walk up to someone on a bus stop and offer for them to share their umbrella. Just out of the blue walked and stood near them and the person, startled by the sudden end to rain pouring onto their head looked up and then over and with a look of bewilderment cracked a nervous smile and tilted their head. And the woman smiled and the light turned green. Or when I went for a hike not far from my house yesterday evening and saw a dad picking his teary kid up off the unsteady hiking path. Just lift them up into his arms and as sure as the grass is green and the river moving told them that everything was going to be alright, they just took a little stumble. Things sometimes happen like the police officer who is called to a house to investigate a possible concern and ends up comforting a little boy who’s all alone or a teacher who has struggled to get a new student to be respectful and listen, gets an email from a foster mom saying thank you and that she’s seen a big difference at home even if there hasn’t been a big difference in class.
Relationships are tough. They’re messy and difficult. They’re taxing and at times confusing. They take a lot of energy and effort and thought. You spend time worrying if what you said was too much or too little, if you are being too intrusive or too standoffish. You rack your brain with what if they don’t understand or don’t laugh or don’t come back. And all of those are possibilities that we face and can leave little pieces of us chipped off. But being in relationships also make us richer, fuller and more colorful. They make us smile and laugh and become more caring. They make us understand and see things differently and open up. They’re tough, don’t get me wrong, but they’re also worth it. They’re worth saying Hi to the person you meet at the airport and worth smiling and asking how they are doing of the cashier at the grocery store. They’re worth reaching out to people we’ve been thinking about and worth letting those in who we’d otherwise keep at arms length. They’re worth replying to the community post someone started about feeling alone and worth getting into even if it doesn’t end the way you’d hoped. Relationships are worth it and I guess since they are…maybe people aren’t so bad after all.
You’re just sad, things will get better. You’re kinda blue today, don’t worry about it. Just take a moment to breathe and collect your thoughts, you’ll be fine. Over and over again we hear similar sentiments from friends, family, coworkers even sometimes medical professionals “everyone gets sad, it’ll be ok.” We are often very quick to dismiss the idea that the sad may actually be something more, that thing that nobody wants to talk about. You know, that thing we don’t say so that others don’t feel bad. Or that thing we don’t admit to ourselves because it makes us feel less than, or broken. That thing we push down and hide away until it can’t be hidden anymore and then it causes us shame, worry, and stress. That word that nobody wants to say out loud… Depression. While the state of mental health has become more normalized in conversation we’re still pretty quick to cast aside depression almost out of fear that by speaking the word out loud we’ll somehow cause people to be depressed.
If you’re an information nerd like I am you’ll appreciate that depression has a clinical, quantifiable definition as stated in the DSM 5 (a manual of sorts used by mental health care professionals to officially diagnosis an individual’s symptoms). While depression is individualistic, there are symptoms and time frames associated with the diagnosis of depression. But we don’t mention that there are now 8 classifications for depression. We don’t clarify that the symptoms have to be present for a specific amount of time. Nor do we stop to think that experiencing fatigue or loss of energy, a diminished ability to think, concentrate or indecisiveness nearly every day could be signs of depression. That having thoughts of inappropriate guilt or worthlessness can be attributed to depression. We’re not aware that depression can be diagnosed at any age and isn’t just something that accompanies grief, but can come on for a number of reasons or at any time.
Depression is one of those things that nobody wants to talk about because it makes us realize how little we know about mental health or how much we as a whole (not just you as an individual) are unwilling to admit about mental health concerns. While we know that everything isn’t rainbows and sunshine we somehow think that if we don’t speak about it then something won’t exist. And that just isn’t true. Talking about something like depression is a good first step to identifying and targeting the problem. It allows us to confront the thoughts and feelings we have and work with someone (a counselor, therapist or psychiatrist) to formulate a plan so that nearly everyday, becomes a few times a week, and then falls over into every once in a while. Depression… Major Depressive Disorder, Persistent Depressive Disorder, Disruptive Mood Dysregulation Disorder, Substance/Medication Induced Depressive Disorder and the 4 other diagnosable types of depression all exist and can be experienced by anyone. Let’s not let depression just keep being one of those things nobody ever talks about.