Summer is officially upon us, and as we all celebrate the warm weather with barbecues and pool days, here are six sun safety tips to keep in mind while you are outside with friends and family this summer:
- Remember that the sun’s rays are strongest between 10:00 am – 4:00 pm. It’s a great idea to limit your sun exposure during these times.
- Apply sunscreen at least 30 minutes before going outside and reapply regularly to keep your skin protected. Using a waterproof sunscreen protects in and out of the water!
- Cloudy days still require sunscreen. 80% of the sun’s rays can pass through clouds.
- Stay hydrated! Don’t wait for your thirst to set in. Remember to drink water throughout the day.
- Protect your head and eyes with hats and sunglasses. Make sure your sunglasses have UVA and UVB protection.
- Some places are easily forgotten when applying sunscreen. Don’t forget to apply sunscreen to the tops of your feet, the backs of your ears, and use an SPF lip balm.
We hope everyone enjoys a safe and happy Independence Day!
Please note that MSAA will be closed on Monday, July 3rd and Tuesday, July 4th in recognition of Independence Day. We will reopen on Wednesday, July 5th.
Featuring Randall T. Schapiro, M.D., FAAN
President, The Schapiro MS Advisory Group
Clinical Professor of Neurology (Retired), University of Minnesota
Question: What are some ways to address and treat MS-related cognitive issues?
Answer: Cognitive issues in multiple sclerosis were basically unheard of before 1983. That was not because they did not exist but because they were not studied. Subsequently they have been studied extensively and problems with memory, planning, foresight and judgement are clearly present in over sixty percent of those with MS. It is important to emphasize that everyone with MS is different and all do NOT have cognitive issues. When evaluating cognition in MS it is extremely important to take into consideration any additional issues of fatigue, depression, and anxiety. These may falsely lead to a cognitive impairment diagnosis and certainly can contribute to making cognitive impairment appear worse. There are neuropsychological tests that can objectify cognitive function and are clearly superior to more subjective testing done at the “bedside” or in the office. Investigators have tried to correlate MRI anatomy with cognitive function with varying degrees of success. At the present it is very hard to predict cognition by looking at an MRI although clinicians often try to do so. In my opinion, the best way to manage cognitive problems is to avoid them entirely by prevention with disease modifying medication. That is one of the reasons we recommend early treatment with these effective medications. Cognitive rehabilitation through a speech pathologist or neuropsychologist can, at times, be helpful but may be less that satisfying. Like many symptoms of MS an answer to disability is mobility and remaining mobile and staying active, using your mind is essential.
Question: How can you tell if the “cog fog” is related to MS or other health issues?
Answer: “Cog-fog” is a somewhat slang expression for the feeling that may intermittently layer onto those with MS giving the feeling of increasing cognitive problems. There is no “officially” accepted physiological explanation for this other than increased fatigue, depression, anxiety. Medically, accompanying issues such as infection or other medical illnesses e.g. thyroid disease should be explored. When there is an acute, sudden onset of “cog-fog” or any new symptom, the treating neurologist should be called to review the situation for something that might be contributing to this relapse.
The 2017 edition of MSAA’s MS Research Update is now available free-of-charge in both print and online versions on mymsaa.org!
Included in this year’s update:
- An extensive overview of the most recent FDA-approved disease-modifying therapies for both relapsing and primary-progressive forms of MS.
- An overview of MS research progress.
- Information on experimental medications.
- A summary of new therapies under investigation.
- Material on new directions in MS research, including new therapeutic approaches.
Please note that MSAA’s MS Research Update does not include information on any symptom-management medications or therapies. For more information on MS, symptoms, and symptom management, please visit mymsaa.org.
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.