This month we’ve been talking about MS symptoms that aren’t spoken about or mentioned as often as other symptoms within the MS community. Some of the symptoms highlighted so far have been issues with incontinence and bowel and bladder challenges. On the My MSAA Community peer-to-peer forum, we recently asked a poll question about which commonly overlooked MS symptoms individuals would like to learn more about, and one of the results has been cognition. Though many individuals are experiencing this issue, it’s still not one discussed very often, and it’s hard not to wonder why.
With the multitude of research that has been – and continues to be – done on MS, issues with cognition are still questioned and sometimes aren’t even associated with the disease itself. Individuals often ask if MS can affect their cognition and thinking when they notice certain changes, and the answer is unfortunately yes – this, too, is another area that MS can influence. If parts of the brain that control judgement, memory, thinking, and reason are affected by MS disease activity and inflammation, then symptoms can manifest and cognitive changes can occur. Sometimes individuals do not know that cognitive changes can be a symptom of MS and they ask if there is something else going on, or is it due to getting older/the aging process itself, or stress, etc. Bringing this and other types of symptoms that aren’t discussed as frequently to the forefront will help increase awareness of them being related to MS, and in turn, start conversations on how to address them.
There are several types of feelings that can be provoked by cognition changes due to MS, and embarrassment is a feeling that oftentimes accompanies this symptom. Individuals can feel self-conscious and uncomfortable if they’re experiencing issues with their memory and thinking—especially when interacting with others or trying to fulfill work or relationship roles. Shame and guilt can be other feelings associated with cognitive difficulties too. People feel they should still be able to do certain things and not have to ask for help or admit they can’t do what they once did. It’s very common for these types of feelings to emerge when it comes to such an impactful symptom that can effect day to day situations so easily. But knowing that you don’t have to feel ashamed or guilty if it does occur is key – and so is knowing that you can talk about it with others who are supportive and can identify with you, as you are not alone in this symptom issue.
MS sets out to be a thief not only of physical body functions, but also of mind operation as well, and it’s to no fault of those affected. It’s important to recognize if you are experiencing cognitive changes or challenges, and to bring it to a healthcare professional’s attention so you can work together to try and address it. MS may have its own agenda, but you can show your power with proactive steps in symptom management and self-care and awareness.
Do you love ice cream? I do!!!
I am always looking at easy ways to impress my family with quick and delicious desserts in the summer. This one is always a crowd winner. Here is a simple summer dessert using ice cream sandwiches! You can use your favorite ice cream sandwich flavor and customize toppings too.
- 1 12oz container of whipped topping
- 1 jar of caramel topping
- 1 jar hot fudge sauce
- 1 package of ice cream sandwiches (box of 12)
- Sprinkles or favorite topping
Unwrap the ice-cream sandwiches and lay them into a casserole dish or a 9×13 baking dish. You may have to cut some of the sandwiches to fit your size dish.
Heat the hot fudge sauce in the microwave and pour over ice cream sandwiches.
Pour caramel sauce over the hot fudge sauce.
Add whipped topping on top of caramel sauce. Use a spatula to spread it evenly.
Top it with sprinkles or anything you like on ice cream (Cookie pieces, chocolate chips, pretzels or candy).
Put into the freezer for at least 1-2 hours before serving.
Cut and serve!
All this month we’re highlighting some of the least talked about symptoms associated with MS. Some of which can also be some of the most embarrassing symptoms to arise from an MS diagnosis. While there is a lot of territory to cover, one of the things that remains the same is that it’s often difficult to discuss these symptoms with friends, family, or even a heath care professional. It’s one thing to mention to your doctor that you are feeling dizzy or having difficulty with heat, but it’s a far different thing to mention that you are having concern over loose bowels or sexual desensitization. While not easy conversations to have, here are some tips and hopefully helpful tactics to use when you have to bring up some of the lesser talked about concerns you may be experiencing.
- Use Your Own Words: Too often we try and get technical or complex in our explanations of medical concerns. But explain the problem to your physician or medical team in words you understand and using language that allows you to explain what is going on.
- Be Honest: It’s habit that when someone asks how we’re doing we’re almost totally conditioned to say “Fine, I’m Fine.” But leaving out details or not wanting to burden your physician during a visit could spell out trouble for you down the line. Be honest about what has changed or is new with you when you speak with your physician or medical team and let them know what’s going on.
- Don’t Miss Appointments: I know this one can be difficult depending on your situation. But making your doctor’s appointments with some regularity gives you an opportunity to be more comfortable with them and for them to get to know and build a rapport with you. Missing appointments too often leaves gaps in your chart and care that might make spotting or explaining unusual symptoms or embarrassing concerns more difficult to confront
- Keep Records: There are lots of things we document – when our car needs an oil change, when our kids have soccer games, that meal we had last night on Instagram. We document everything from what we buy, to what we think, and everything in between. Make this apply to your health also. Document changes you notice, feel, experience and any information you can attach to it. This may seem a bit much but when you need to recall how long the mouth dryness lasted or your vision was tunneled you will be glad you kept good records. Having a tracker like the My MS Manager™ app can help you keep all your notes in one place and have them to refer to when you talk with your physician
- Know That You Aren’t The Only One: We often don’t want to discuss embarrassing or strange things that occur to us or we experience as part of our health, for worry that we’re the only one having this problem. Even if it is a rare side effect or symptom, the odds are you are not the only person who is experiencing it. Put your mind at ease and know that of the hundreds of thousands of others living with a diagnosis, the chances you are the only one are pretty slim.
There are a bevy or symptoms that are less experienced than the more well-known ones, but that doesn’t mean you shouldn’t discuss or get answers for them. Knowing who to ask your questions of is another good point to remember (we’ll call this a bonus one). Deciding to have medical conversations with a medical professional or asking mental health related questions of a therapist or counselor give you the best chance of getting some answers. Yes, your neighbor or relative may be able to answer them for you, but making sure to connect with the right people is key to addressing many of the concerns you may have.
Memorial Day is regarded by many as the unofficial opening of the summer season. You may celebrate with family cookouts, a day at the beach, a relaxing day at home, or at a local parade. However, it is also important to remember that Memorial Day is set aside as a day to remember all of the service men and women who have fought and died for our country.
On this national day of remembrance, MSAA honors all of the men and women who have fought courageously for our country and given their lives in its service.
Please note that MSAA’s offices will be closed on Monday, May 29th in observance of Memorial Day. We will be back on Tuesday, May 30th.
Have a safe and happy Memorial Day!
Earlier this month I talked about considering a staycation in regards to planning and preparing for the upcoming summer months. Not everyone may be staycationing around their home this summer so I wanted to talk about travel preparations if summer is going to take you out of your backyard. In a prior post about summer traveling, we reviewed some things to think about and prepare for when creating your travel itineraries. Considering things like accessible accommodations, materials needed for the trip, and who you can work with for assistance were some of the discussed topics. It’s important to do what you can when making travel arrangements so you can be prepared as best as possible, especially when dealing with an unpredictable disease like MS that makes its own plans a lot of the time.
While the planning piece of the trip is significant, let’s circle back to the beginning when you’re thinking about your destination. What’s important to you when deciding where to travel? What does the decision process look like? Everyone has their own needs and wishes when contemplating journey destinations; many even have a ‘bucket list’ of desires that they wish to accomplish at certain points of their life. Some individuals may have a random selection method they use to pinpoint their vacation spot—pick a point on the map and go. Others are very methodical in their decision making because there may be multiple factors that need to be taken into account to plan the journey. Either way, it’s good practice to be mindful and considerate of what your needs and wishes are and to not be afraid to fulfill them. Half the fun is in the planning so enjoy even these smallest of moments along the way.
What are some of your plans for the upcoming summer months?
Last week, our friends at Healthline published their list of the best multiple sclerosis blogs for 2017, which includes MS Conversations! Every year, Healthline compiles a list of the best blogs for the MS community based on the information provided and the personal stories shared throughout the year.
MSAA is thrilled to be included on this list, and we would like to thank all of our contributing writers and our guest bloggers, who share their powerful and unique perspectives on living with multiple sclerosis with us every month!
Check out the full list of winners on Healthline’s website.
This peach milkshake recipe has just a few ingredients and is perfect for sipping on summer nights. It would be a perfect treat for the Memorial Day weekend too. Who doesn’t like a milkshake!
I like to keep my blender right out on the counter so making a milkshake is an easy thing to do.
- 1 (15 ounce) can sliced peaches, drained
- 4 scoops vanilla ice cream
- 2 cups vanilla soy milk, or 1% milk
- 1/4 cup orange juice
- Splash of vanilla
- Dash of cinnamon
In a blender, combine peaches, ice cream, soy milk and orange juice. Blend until smooth. Pour into glasses and top with whipped cream.
If you can believe it, we are already in the month of May! 2017 has been steadily moving along and this month we are looking into the topic of coping. Everyone has their own versions and ideas about how they best cope with, and through, stressful or difficult situations. For years professionals have presented, written about, fine-tuned and zenned over the most positive ways that we can cope. While not every example will work best for every person it’s always great to have some ideas in your back pocket when the need arises. There is nothing wrong with testing a few out to see which ones do not work for you and which ones are your go-to when counting to 10 just does not cut it anymore. You can try:
- Cooking or Baking
- Scheduling some time off and stick to it
- Spend some time with young children or animals (both tend to be care free and some of that may rub off on you during your time with them)
- Create something artistic (this can be any number of mediums such as music, clay, paint, found objects, writing, photography and the like)
- Visualization, Meditation. Group or Individual Therapy
- Physical Activity (this too can be any number of things; swimming, dance, yoga, stretching, sex…yep, you read that right…a bike ride or walk)
- Give of yourself to organizations you are interested in. Volunteering can not only help you, but also others
- Explore something in your area that you haven’t before
- Get some more sleep
- Seek out speaking with friends or family and expressing your emotions
We all know that we have some negative coping mechanisms that may help for a short period of time in the moment but still leave us a bit in the lurch. Seeking out more positive ways in which to cope, these or others may help us to set up a more positive pattern to help deal with a negative situation. We’d like to hear some of your positive coping skills or ideas that you’d like to share. Take a moment to check out our thread on My MSAA Community.
Recently, our friends at Healthline.com asked a question to individuals with MS:
“When you have MS, what is the ONE thing you cannot live without?“
Healthline collected responses from various bloggers and MS community members to compose an article of the many ways people with MS are able to overcome challenges thanks to their strong support systems. Take a look at the ways these individuals stay motivated during tough times, and what helps them remain positive in the face of adversity. Some examples include family, friends, the outdoors, wheelchairs, and even MSAA! Read more examples here. What is something you can’t live without since your diagnosis?
P.S. – You may recognize a few names – MSAA clients Cathy, Sara, and Simone from our Changing Lives Monday to Sunday video offered their insight to Healthline as well!
Wow, can you believe it’s already May? Time feels like it’s flying by and we’ll be headed into the summer months before you know it! Many people spend time traveling and taking trips during the summertime, usually because kids have off from school and different attractions set-up shop and thrive during these warmer months. But many people aren’t able to travel abroad or from state to state for various reasons at times; so you may have to get a little more creative about how to spend these vacation days.
The word “staycation” is an expression that has increased usage within the past 10 years or so as a way to describe a vacation spent at home—spending time seeing local attractions, participating in activities close to home, or just hanging out in the backyard. What constantly amazes me is how many beautiful and remarkable sights so many people have right in their own cities! The world is filled with many extraordinary attractions and wonders, but sometimes it’s nice to be able to start at home with learning and appreciating what’s nearby. From parks and forests to museums and historical landmarks, there can be new things to explore and experience right near home. Traveling can be great, but a staycation can be just as satisfying. A staycation can also reduce stress because you don’t have to deal with long distance travel and spending excessive amounts of money; it may be more relaxing to just lay low and plan day trips and activities at your own leisure.
If you’re going to commit to a staycation, one of the most important things to do is to unplug. This means that if you are employed, disconnect from your email, and do not go into work just because you’re close to home! If you participate in daily groups or activities that you want to take a break from, this is the time to do just that. If you want to stray from your day to day and do something different, this is your opportunity. It’s tempting to stay connected because you’re not truly ‘away’ on a vacation elsewhere, but it’s still YOUR vacation, and you deserve this time as much as anyone. If you want to make other guidelines for your staycation like not using any electronics at all or not communicating to certain folks, that’s completely up to you! After all, it’s your time to do what you wish, and if your wish is for a restful staycation, then sit back and enjoy it!!
Have you ever had a staycation? What were some things you did to enjoy your time?