I know I know… the diehard summer enthusiasts are screaming at their screen “fall begins on September 22nd not September 1st, not September 12th… September 22nd!” To which I say, when Starbucks brings out the PSL, it’s officially fall. But I digress… Fall is the season of harvest, of reaping the hard work that comes from busy seasons of planting and tending. It’s the last hurrah before plunging into winter… which if last winter is any indication could last straight into next summer. As we approach fall I challenge you to Continue reading
Memories are a weird thing. They can invoke this sense of nostalgia and transport you to a time when you were a pirate sailing the seas and pillaging villages from the comfort of your backyard. Or remind you why you avoid scary movies thanks to that aunt who made you watch Child’s Play. When you were a kid… alone… in the dark (I still don’t forgive you!). But memories are tricky. We can find ourselves either remembering something as better or worse than it actually is Continue reading
I’m not sure about where you are but summer has been brutal so far this year in the North East! For you pessimists let me say “Yes, I know two months ago we were all complaining about winter and wishing summer would get here already.” But these temps are something else. Whether you have MS or not, the high heat index can make you rethink that stroll outside (like, really how is it 75 degrees out at 6AM?!?!?!).
Now I know cabin fever is usually reserved for the middle of winter blues but we can get stuck in doors in the throws of summer, also. Continue reading
With the end of the longest winter in history outside of Westeros (I see you Game of Thrones Fans) we turn our attention to sunshine and warmer days. And with those warmer days comes vacation season. Not that you are not allowed to take a vacation at other times during the year but the summer months tend to be high points for packing up and taking off to places away from home. But there is something to be said for vacationing right in your own home town. Continue reading
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”