Startled Awake by Multiple Sclerosis

For anyone living with multiple sclerosis, nights can be a time of stress and worry. Just as you tuck into bed, spasms and tremors grip your legs and body, making sleep impossible. Some of you have just discovered this painful side effect, while others of you have been living with this symptom for years and have found ways to cope.

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Finding Myself In A Funk: Staving off Depression Due to MS Disease Progression

By Stacie Prada

Each time a symptom worsens, it can trigger fear, grief, and depression: fear for the unknown future, grief for losing some physical or cognitive ability, and depression for the sadness of the whole life with multiple sclerosis experience.

Lately, spasticity in my arms and legs is increasing. Spasticity results when the central nervous system sends messages to parts of the body involuntarily causing them to tense. It’s causing me physical pain and affecting my coordination. I’ve tackled spasticity head on by talking to my neurologist, starting medication, stretching, exercising, and getting referrals for physical and massage therapies.  It’s a bit overwhelming since I have enough in my life consuming my time already.  But beyond this common MS symptom is the emotional distress triggered when I think about what will likely come as my disease progresses. My mood is flirting with depression, and that worries me.

It helps me to know that our moods will always ebb and flow between the highs of joy and lows of depression. It’s impossible to experience life joys and hardships without a changing mood.  For me the goal is not to avoid sadness, it’s to recognize when I’m headed for depression and use those low feelings to motivate me.  I hope to redirect my behavior and thoughts to something personally productive.

Being diligent about watching for potential depression, validating feelings, taking action, and assessing the experience after each episode helps me deal with the cycles of adjustment and depression that come with having a chronic and progressively debilitating illness.

Be diligent about watching for potential depression. The goal is to anticipate when I might be susceptible and recognize the subtle signs before it’s more difficult to course correct. Some ways I’ll recognize I’m at risk for depression are the following:

  • If something in my life is causing increased stress or symptoms are worsening, I’ll ask myself how I feel about it. Does it feel manageable? Does it scare me? I need to pay close attention to how I’m dealing with stressful situations and be on the lookout for depression.
  • Friends and neighbors check in on me when my routine is unusual, and I try to be someone who checks in on others. It’s critical to let them know I appreciate it when they check in, otherwise they may feel discouraged from doing so.
  • I try to notice if I’m declining activities I enjoy because they seem like too much effort. Given that fatigue can contribute to this, it’s good to be honest about the reason for the decision. We don’t do ourselves any favors with self-deception.  We just delay helping ourselves out of a difficult situation and potentially increase our suffering.
  • Trust and encourage people close to me to let me know if they think something is off with me.

Validate feelings.  Remember our physical and emotional health are inextricably entwined.  Recognize that it’s normal to feel depressed when our health is declining. It’s not a character flaw or personal failing to experience feelings of depression. Give yourself credit for doing as well as you’re doing.  Consider that you have a lot of skills that keep you living well with your condition and that needing more help is reasonable and going to happen periodically.  Remind yourself that you don’t have to feel terrible and these feelings don’t need to last forever. There are actions we can take that can help.

Take action. I’ve found that if I can take just one little step to offset my low mood, it can put me on a path toward feeling optimistic and empowered again.  Intentionally make the first step small.  Success is what’s needed at this point to encourage taking the next small step that will hopefully lead to more.

  • Do things that naturally help your body release mood-boosting endorphins. Use the mind-body connection to your advantage by listening to music you love, dancing, stretching, and moving your body. Triggering your body to release endorphins won’t solve your problems, but it will make you feel better temporarily and sometimes that’s the best we can do in that moment.
  • Power through: Pushing yourself to ignore feelings of depression can help in a moment, but recognizing depression and addressing it directly is necessary for long-term wellness.
  • Pursue connection: Talk to someone. Your neurologist, counselor, confidants, and online groups closed to people with MS can be a good sounding board. They can help validate your experience and help you find your way through these feelings.
  • Contribute: Whether it’s through work, volunteering, mentoring, or even casual encounters throughout the day, find ways to contribute to society. Knowing that your value is more than your physical abilities is crucial for adapting each time your body deteriorates. Having purpose and giving to others helps develop this sense of self-worth. There are ways to accommodate disability to continue being able to contribute even if it looks different as our disease progresses.
  • Seek personal growth: Learn something new, create something, or seek opportunities to see things differently than you have in the past. A change in perspective can neutralize feelings of depression dramatically.
  • Consider supplements and medications: Talk to your doctor about treatments available to you. They can be used temporarily to offset depression that has surpassed the point of being able to tackle without medication. Medication may also be helpful for ongoing maintenance if needed long-term.

Assess the experience. Think about what triggered feelings of depression and what helped you to feel good again so that you might be more prepared for next time. Think of it as weaving a personal safety net that includes your posse of friends, family, and health care providers along with lessons you’ve learned from past challenges. Remembering your previous successes will help you be your own inspiration when you need guidance in the future.

The time between when I start exhibiting tendencies toward depression and when I recognize it may not be as fast as I’d like, but with practice and self-awareness I keep getting faster. Improving my response time reduces periods of distress and helps me build confidence in my ability to face my future with MS. I’m still in the midst of applying these lessons to my current situation, but I think I’ve reached a turning point. I have faith in my safety net, and I know that I’ll adapt. I also believe that thriving in life doesn’t depend on life being easy; instead I think facing challenges head on with grace is what thriving looks like.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Black Swan MS

By Stacie Prada

I learned about Black Swan events recently as they relate to investing. Multiple sclerosis symptoms and progression seem to me to be personal Black Swan events. Nassim Nicholas Taleb developed the theory based on the history of black swans being thought of as an impossibility.  It was a known fact that they didn’t exist. So when black swans were discovered it was a surprise and significant, and in hindsight black swans seemed like something that people could have predicted or should have expected.

Being diagnosed with MS was an enormous Black Swan event in my life. Suddenly the extreme fatigue, numbness and bowel issues that held no explanation for many years were obviously indications that something was wrong with my body. The signs were there, but I didn’t recognize them as related to each other or of any significance. Given how much these symptoms impacted my life, hindsight makes me seem foolish for not connecting them to a major health issue.

Most recently, my feet started buckling more frequently with a frustrating experience of losing the ability to walk temporarily. It surprised me.  It made me realize that MS is affecting my legs much more than I’d thought.  And in hindsight I remember all of the dismissible moments when my feet would buckle.  There were times when one foot would stop supporting me while standing among friends. Other times while walking, one foot would shift so that I lost my footing on flat ground and needed to catch myself. I just thought they were odd, one-off unexplainable experiences.  Now I recognize them as a very common MS symptom that I already knew about – spasticity. What is obvious to me now seems like it should have been obvious to me then. In my defense, the frequency and impact previously had been low.  Now that they’ve increased, I see a pattern and progression.

Now that I know what’s happening, I can work with my doctor to try to offset how my body is behaving. I’m continuing to do stretching, strengthening and movement activities, and I’m adding medication, massage and physical therapy. My shoe choices are also changing to reduce embarrassment and possible injury.  It’ll take time and effort to see if I can change the course of how MS affects me.

It’s like reading a book or watching a movie where all will be revealed at the end.  I’m living in the middle of my story, and by the end the mysteries of my body will be pieced together, explained and understood.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at stacieprada.blogspot.com

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Working Together with the Spasticity Alliance

By Kyle Pinion, MSAA’s Director of Advocacy and Public Policy and Southeast Regional Director

Have you ever woken up one day and found that your legs have painfully, and involuntarily, tightened? Or perhaps you were sitting in your favorite chair one afternoon while watching the football game and in the middle of a great play realized that your arm muscles clenched in a way that was incredibly uncomfortable. Those who are living with the progressive forms of multiple sclerosis are likely to understand this symptom all too well: spasticity is a tightness of the muscles, typically occurring in the legs, groin, and buttocks, though not exclusive to just these regions. While treatable in ways that can potentially reduce its effects, this symptom of the disease can be very debilitating and contribute to disability.

What you may not be aware of is that those living with MS are not alone in experiencing this troubling manifestation of their disease state. Many other condition-based populations see the effects of spasticity first-hand, such as those who have suffered a stroke, people living with cerebral palsy, and even those who have dealt with traumatic brain or spinal cord injuries. As such, advocacy organizations that represent each of these conditions recognize that greater amounts of information and resources are needed to help people living with spasticity grasp a better understanding of its effects and how to best seek treatment. To that end, the Multiple Sclerosis Association of America, United Spinal Association, United Cerebral Palsy, National Stroke Association, and the Brain Injury Association came together in June and initiated the planning process for what would turn into the Spasticity Alliance.

SpasticityAs MSAA’s representative for our regular Alliance meetings, it’s been fascinating to learn about the larger scope of spasticity’s effect on other disease states beyond our own organization’s purview. I’m so thankful to be able to share not only resources that have proven to be mutually beneficial, but also stories of people who experience this troubling symptom on a day-to-day basis.

When the Spasticity Alliance website launched in July, the outpouring of support from both the patient and professional communities was utterly overwhelming, as many deeply appreciated this pooling of efforts by advocacy organizations to provide resources and educational material for those living with this challenging and painful manifestation of these individual conditions – a manifestation that is all too little discussed. As we close out 2016, we’re looking forward to the further growth of the Alliance website, with very exciting plans on the horizon to make it an even more engaging and informative experience for our clients when they visit.

In the meantime, if you or someone you know has experienced spasticity, please visit the Alliance’s site at spasticityalliance.org. If you have any further questions regarding issues related to this symptom, please feel free to reach out to our Client Services department at (800) 532-7667, ext. 154 or via email at MSquestions@mymsaa.org.

Additionally, if anyone living with MS, or their family members or friends, would like to share their story for the Alliance’s site, please do not hesitate to reach out to MSAA and we’d be happy to discuss this with you further. Your stories really can make a difference through encouragement, fellowship, and education.

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MSAA Joins Spasticity Alliance

Spasticity Alliance

Spasticity, which is an involuntary tightness or stiffness of the muscles, is one of the most common symptoms of multiple sclerosis (MS), affecting approximately 80 percent of those living with the disease. Among other issues, it can be painful and limit movement. Like many MS symptoms, spasticity can have a negative impact on a person’s quality of life.

To increase education surrounding this symptom and treatment strategies, the Multiple Sclerosis Association of America (MSAA) is proud to announce that we have joined with the National Stroke Association, United Spinal Association, United Cerebral Palsy, and the Brain Injury Association of America to form the Spasticity Alliance, found at www.spasticityalliance.org. Together, our goal is to raise awareness about spasticity and help people living with spasticity resume normal daily activities.

This site, launching in conjunction with Spasticity Awareness Week (June 13-19), features a variety of educational resources, multimedia tools, and personal stories of those with different health conditions living with spasticity. The Spasticity Alliance hopes to empower individuals and their family members through these valuable tools, along with offering effective management options.

Spasticity Alliance Learn More

 

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Assistive Technology for Individuals with MS

Over the course of years living with a disease such as MS, there may come a time when more assistance is needed to complete daily activities. Perhaps typing on the computer is becoming a challenge due to spasticity, or driving a vehicle has become difficult because of numbness in the leg. While it may not always be conducive to ask another person for help, perhaps a piece of equipment can aid in getting the task done more effectively. Assistive technology, or AT, is any item, piece of equipment, or software that is used to increase or improve the functional abilities of individuals with disabilities at school, work, home, and in the community.

Young woman with tablet computer and coffee

Assistive technology devices can assist those who may have difficulty with speech, typing, writing, cognition, walking, etc. In each state, a State Assistive Technology Project is available to provide information on assistive  technology and consultation about the type of technology piece that may be helpful. A borrowing program may also be available where the devices can be borrowed for up to a certain period of time to see if the device will be effective. Information about available loans to help with more expensive devices can be discussed as well.

In trying to determine the type of device that may be helpful for a specific need, working with a rehabilitation professional such as a physical or occupational therapist might help to clarify the type of device that would provide the best assistance. They can make specific recommendations of devices that can assist with a variety of needs and may also help with checking whether insurance will cover the item recommended.

What assistive devices have you used? What avenue did you take to receive the device?

 

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