Talking with Friends and Family about Multiple Sclerosis & its Symptoms

Posted on September 23, 2013 by Samantha Schech

For this month, we focused our blog around managing MS. Some helpful tips were provided and the one that sticks out to me was about “asking for help”. Understanding your limits and what you are able to accomplish in a day is a great way to conserve your energy and focus on what is important. Often times it is important to involve those around you, but navigating the “how to” is a challenge.

For those who struggle with the symptoms of MS that may not be visible (i.e. fatigue, pain, and cognitive changes), the hidden symptoms of MS, asking for help from a friend or loved one can often be a daunting task. We frequently hear and read stories from individuals who feel guilty asking for help, because they don’t feel that they “look” sick. They fear they will be judged in asking for help.

It may be helpful, before you tell everyone about your MS symptoms to think; does this person play a significant role in my life? And, can I rely on them in the future if I need help? If the answer to both of these questions is yes, then it is time to put on your teacher hat and educate those identified helpers about what types of symptoms you experience and what they may look, or sound like, for you. MSAA’s The Motivator Winter/Spring 2013 edition discusses may of the hidden symptoms of MS: https://www.mymsaa.org/publications/motivator/winter-spring13/. This publication can be shared with friends and loved ones to further provide education and information.

Not every person with MS experiences symptoms in the same way, so providing information as to how MS looks and feels to you is very important. With more understanding and better education, we can hope to reduce the stigma around the hidden symptoms of MS and promote a more positive experience for both yourself and your loved ones.

Please share your experiences, have you had to educate your friends and loved ones about the symptoms of MS? What has worked for you?

Getting a Second Opinion When You’ve Been Diagnosed with Multiple Sclerosis

Posted on September 18, 2013 by Ashley

So when I was diagnosed with MS, a general Neurologist diagnosed me. Everything was so hectic at the time; I was just trying to understand what was going on … and why I needed to get IV Steroids…

I had never heard of MS, so I was trying to find out everything I could about it. Once the initial shock wore off, I had multiple people ask me if I had received a second opinion. At the time, I was getting aggravated, wondering why everyone was in denial, when I was just trying to cope w/ the changes going on in my life.

I finally decided to get a second opinion, not only from a different neurology office, but also from an MS Specialist.

I can honestly say, that was the best decision I had ever made. Come to find out my general Neurologist was intelligent, yes, but didn’t know as much as my MS Specialist did, and it turns out I was being over medicated on things…

I honestly don’t think I would be where I am right now in living with MS, if I hadn’t gotten that second opinion, which others were suggesting I do. I later learned that a lot of people get a second opinion, or want to see a Specialist in the MS field to ensure they are receiving the best care possible.

I know some people who have had more than 2 or 3 opinions on their diagnosis, and I’m glad I only had to make one change in neurologists, rather than keep on searching.

It’s very odd to think back and see the difference in the opinions of my previous and current neurologist. While they are both very well educated, they just treat their patients differently than one another. Which, in this case, was a VERY good thing. (Did I mention that my diagnosing neurologist stuck me SEVEN times, yes that’s right SEVEN times, to get my spinal fluid for a lumbar puncture aka spinal tap.)

I think all patients should exercise their patient rights… if you aren’t comfortable with your current neurologist (or any physician for that matter) you have a choice to find someone you are comfortable with. It’s a VERY important matter, considering your health is in their hands, so to speak.

Where Do I Fit This In?: How to Prioritize When You Have MS

Posted on September 16, 2013 by Angel Blair

Let’s face it, life is hectic. It can be messy and chaotic, and that could be just your morning. We live in a world that thrives on fast-paced routines and schedules, so people rarely have time to manage their day to day, let alone trying to manage a chronic illness like MS. Medication and symptom management play a significant role in the course of this disease, so it can be challenging to find time in the day to fit these tasks in along with life’s expectations in general. How does one try to find time to rest, or jot down questions to ask the doctor at the next visit, or to document a new symptom that has come on? There seems to be a limited amount of hours in the day to complete all of these demanding limitless activities.

Here are some tips on how to manage these tasks along with the day to day:

Make time to take breaks. When you have a chance to rest, do so, even if for just a few moments in the day. It may be what you need to give yourself a boost or to take the time to write down a question for the doctor.
Have someone else help you! It’s challenging for some people to ask for help, but if it allows time for you to take care of yourself, ask!
Use the MSAA’s mobile phone application My MS Manager to help keep track of your symptoms and medical records, as well as current MS related news.
Prioritize! Sometimes there just isn’t enough time in the day to complete all tasks, but your health should be a top priority. Make yourself a list of attainable tasks to perform in a day, and make sure health related tasks come first.

What are some ways you manage the day to day?

Greetings from the Northeast! An Update from Multiple Sclerosis Association of America Northeast Regional Director

Posted on August 30, 2013 by MSAA

By Lauren Hooper

Greetings from your Northeast Regional Director! As summer begins to wind down and fall approaches, MSAA has a few educational programs lined up in the Northeast Region, and I hope you’ll consider joining us if there are any coming up in your area.

On Tuesday, August 27^th, I traveled to Morristown, NJ for a program on symptom management in MS that focused on helping patients to identify the overall range of MS symptoms (especially symptoms with treatment options available) and how to best address them with their professional care team. Dr. Mary Ann Picone from Holy Name MS Center was the guest speaker, and she made sure to answer every attendee’s question during the Q&A session. It was such an interactive program, and as everyone was leaving, a few people stopped to tell me how nice it was to be able to talk to a physician outside of the clinical setting. Everyone seemed relieved to have had all of their questions addressed, and I was thrilled that they benefited so much from the program.

In September, my travels will take me to Maine, Massachusetts, Vermont, and Maryland. On September 14^th, I’ll travel to Bangor, ME for a patient program on “Tackling the Everyday Challenges: Recent Breakthroughs in MS Symptom Management & What’s to Come” (support.mymsaa.org/Bangor). On September 21^st, I’ll be in Braintree, MA for a program designed for parents and children to help build a better understanding of MS, called “Bridging the Communication Gap between Parents with MS and their Children” (support.mymsaa.org/DBBraintreeMA). On September 25^th, I will head to Burlington, VT for a patient program on “Cognition in Multiple Sclerosis” (support.mymsaa.org/Burlington). And I’ll wrap up September in Baltimore, MD on September 28^th with a patient program focusing on the African American experience with MS entitled “A Closer Look at the African American Community and Multiple Sclerosis” (support.mymsaa.org/Baltimore).

Later this fall, I am also planning on holding programs in Pennsylvania and New Hampshire, and I hope to get back to New York before the end of the year as well. If you don’t see a program in your area, please keep checking our Calendar of Events (support.mymsaa.org/calendar) regularly, as we are constantly adding new programs. I hope to see you at a program soon!

* Lauren Hooper is the Northeast Regional Director at MSAA.

Running on Empty

Posted on July 26, 2013 by MSAA

Have you ever been in a car which has run out of gas? If you haven’t, the car slows… you may coast a bit, but quickly movement putters out. For many people with MS, fatigue can be much the same, one minute you are moving around and then suddenly the momentum changes and your energy level drops. For some people, they may even feel that to take one more step or motion is too much and may need to immediately sit or rest.

In a car there is a gauge which shows you when the gas tank may be getting low, people are not so easy to read. Some people may even feel as though the internal gauge is broken.

So, what can you do to try and prevent your engine from stopping?

Some quick energy conservation tips:

Listen to your body
Plan for your day (try not to plan too much)
If you can, try to schedule rest breaks into your day or activity
Talk to your doctor about your experience

For more in depth information on MS Fatigue see the following link: https://mymsaa.org/about-ms/symptoms/fatigue/.

What is a Pseudoexacerbation?

Posted on July 24, 2013 by Angel Blair

For many individuals with MS, the summer can be a difficult time. The heat and humidity may cause MS symptoms to flare and become agitated because of heat affecting one’s body temperature. For some who experience a worsening of symptoms in warm environments, this may actually be an example of a pseudoexacerbation. A pseudoexacerbation is a temporary worsening of MS symptoms, without the presence of actual myelin damage or inflammation. Other than heat, individuals may experience this as a result of other illnesses or infection. It is important to take note and be aware of what symptoms you are experiencing, how long they occur, and your environment surroundings. If you find yourself heat-sensitive, try to avoid warmer settings. Stay in air conditioned places, do outdoor activities either early in the day or after sunset when the temperature is cooler, and wear lighter weight clothing when needed. If you have concerns about or are experiencing new symptoms it is important to be aware of your activity and surroundings, especially during these warm summer months!

For more information on pseudoexacerbation, see the MSAA brochure, Understanding and Treating MS Relapses, https://mymsaa.org/publications/understanding-treating-relapses.

Tips for Staying Cool and Conserving Energy

Posted on July 10, 2013 by Samantha Schech

As the temperature continues to rise during these summer months there are several ways to help beat the heat and conserve your home energy. Start by trying some of these tips to lower your energy bill and keep your home cool!

Keep doors closed to uncooled parts of your home. If you have central air conditioning, close off the vents to any rooms that you will not be using.
- Tip: The lowest level of a home is often the coolest. If you have a basement, plan to spend most of the day in this room, to avoid over cooling the rest of your home.
Using ceiling and other fans, even if you have air conditioning, helps to provide additional cooling and better circulation of the cooled air.
- Tip: Place a bowl or tray of ice water in front of a fan to increase the chill factor!
Seal any holes or cracks around doors and windows, this helps to eliminate cold air leaks. Make sure to seal around window air conditioners with insulation.
Close the blinds and shades in windows facing the sun to keep out the sun’s heat and help fans and air conditioners cool more efficiently.
- Tip: Check out energy efficient curtains or blackout curtains to help keep the light and heat out of a room!
Clothes dryers and dishwashers produce a lot of heat. Use them in the early morning or late evening, not during the hottest part of the day.
- Tip: Wash clothes in cold water and air dry in front of a fan. This tip works the same as the bowl of ice water!
Turn off TVs, computers, and other electronic devices rather than use standby mode. Electronic devices can create additional heat in the home.
Unplug items like cell phone chargers, DVD players, microwave ovens and other appliances. They still use energy even when turned off!
- Tip: Plug electronics into power strips and turn off the power switch when the items are not in use.

The Low Income Home Energy Assistance Program (LIHEAP) helps keep families safe and healthy by assisting families with energy costs. Check in with LIHEAP about energy conservation and low income energy assistance programs. Often in the summer months, those with lower incomes, or individuals with disabilities are offered discounts on their energy bills to help keep their homes cool during the summer months. For information on applying for LIHEAP assistance, please contact your LIHEAP State or Territory agency.

Staying Active with MS

Posted on June 28, 2013 by Ashley

Usually when we hear “stay active” people are referring to some sort of exercise. But, that’s not what I’m implying when I say it, I like to keep my mind active.

And I don’t mean keep your mind active by stressing about what’s going on in your life or how your MS is affecting you that particular day. I mean, test your brain. Play some games online that really make you think; get a crossword puzzle book; or you can play games on Facebook, like I do!

However, if it’s one of those days where you just don’t even want to think too hard, because your head just can’t handle it, get lost in a book! That’s my favorite thing to do! I don’t sit there and worry about what’s going on in my life when I get lost in reading a book that I can really get into.

I can’t even describe how time goes by when I’m doing these things and how I don’t worry about how I’m doing with my MS, or anything else going on in my life. My brain is being active, but not to the point where it’s stressful, it’s relaxing. Something I really enjoy that we do at MSWorld.org is every Friday Night at 8pm ET, we play “Trivia.” One of the chat hosts puts together an hours worth of trivia, and the whole chat room plays. It’s nothing that is a “competition” or makes you think too hard, it’s really fun and gets you thinking!

Of course, it’s always good to stay physically active with MS… that’s a given, but I like to have a workout session with my brain more often than physical workouts! Needless to say, the only physical workout I can endure with out “over doing” or hurting myself is swimming. And I’m not just talking about hurting myself from doing too much, but I have made a fool of myself at the gym because I’m a walking accident!

So since it’s Summer time, take this time to enjoy and get your brain working, but in a fun way!

Preparing for a Doctor’s Visit

Posted on June 24, 2013 by Ashley

Okay, so we all go to doctor’s appointments… and we have to get there early, in order to fill out paper work… and while we’re filling our paper work in the doctor’s office waiting room, we have to try and ‘remember’ everything that we need to write down for the doctor.

So I’m going to share some things that I do, in order to prepare for a doctor’s visit… without forgetting information that needs to be shared.

For starters, I keep a journal. In my journal I keep note of any changes in how I’m feeling or how I’m reacting to medication. It’s also very handy, when I need to write down a question I want to ask my neurologist, and if I don’t write it down right then… I’m going to forget, even if I tell myself that I won’t.

Something I always have on me when I leave the house, (as well as at home saved on my computer), is a medication list. This way, if something was to happen and I have to go to the ER or anything like that, my medication list is always with me.

I can also say that I would be completely lost, if I didn’t program alarms on my phone for upcoming appointments, and to even take my medications! Yeah it’s annoying, but I don’t forget!

Having a list of my medications as well as my journal of how I’m feeling and how I’m doing on medications, etc., really helps when I go to see my neurologist. It also cuts down time that I have to fill out paperwork, which can sometimes be troublesome as I also have issues with Upper Limb Spasticity (in my hands) mainly in the summer months, so it’s not always “easy” to fill out paperwork.

One of the benefits from keeping things written down in my journal is that, my neurologist can see what triggered me not feeling better… like I stated earlier, my spasticity gets worse when it’s hotter outside, so I know what has caused the increase in my spasticity. (Mind you, I live in Central Texas, and it’s almost always hot here… so let’s just say “hotter”… like today’s “Real Feel” is 102 Degrees Fahrenheit.)

Now, I don’t carry around a small notebook with me anymore, but I do use my phone to keep notes on how I’m doing. You have to enjoy and embrace technology these days, as the famous saying goes … “There’s an APP for that.” (MSAA does have a mobile phone app, My MS Manager, which offers a journaling feature) It’s all true.

One last tip, if you’re the type of person to forget things easily, like I am see if your doctor would mind if you brought a voice recorder to your appointment. This will allow you to play back the visit and conversation to yourself when you’re at home. This is especially helpful if your doctor answered some of the important questions you had been waiting to ask.

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