Caregiver Wellness

Caregivers are some of the most important people in the world. They dedicate themselves to caring for someone else with their time, commitment, sacrifice, and compassion. Being a caregiver to someone else means they don’t always have the time to care for themselves. But everyone’s wellness and care are important, especially for those who need to be there for another person. Caregiving is an enormous task that can stretch people thin and make it difficult to carry out or even think about one’s own wellness. It’s no one’s fault – there is only so much time in the day and when the majority of that time is focused on someone else’s care, a caregiver’s own wellness and physical well-being are often just put on the back burner. The same is true of parenting/family roles and helping professions; others needs are simply put first, without question or expectation.

Caregiving doesn’t necessarily mean that person has to do everything themselves either. Knowing when and how to ask for help is a great strength, and for caregivers there are resources that can help. Oftentimes these resources are geared towards those caring for someone elderly, but it’s these same types of contacts that can help those caring for disabled individuals too. Communication is vital in the caregiver role; being able to talk about what is needed or what’s currently going on is essential to maintaining balance and stability. One key element to caregiver support is respite; a period of rest and relief for those carrying out this role. It’s also a significant piece to wellness – taking a break to focus on one’s own needs and having the peace of mind to know that the person they care for is safe in that moment too. It’s not a selfish act by any means; it’s a necessity of life. You have to take care of yourself in order to be able to take care of someone else. Selflessness is an admirable quality but self-care is equally important.

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Where’d that Bruise Come From?

If the walls and the furniture would stop moving I wouldn’t have any bruises

Do these words sound familiar: “Woah, how’d I do that?” or “When did I cut myself?” If so, you are certainly not alone. We recently shared an article about mysterious bruises that started quite the discussion amongst the community. With over 160 comments, it quickly became clear that unknown bruises, cuts, burns etc are a regular occurrence among many MSers, but how and why these happen is where it gets really interesting. Here’s what our community members told us!

That’s What Caused it?

While many of the bruises, cuts, bumps, scrapes, burns show up as if from nowhere, others have a very clear cause. Though sometimes it takes a while to realize what that cause is!

  • It took me a while to realize my bruises were from hitting my elbows on doorways to catch my balance when I was carrying the laundry basket.
  • I finally figured out my shin bruises were from those small carts at the grocery store. There’s a little bar across the bottom that hits my shins!
  • I’ll often notice a new scratch on my hands or legs and realize, a day later, it was from my cats
  • I can’t tell you how many times I’ve burned my hands cooking dinner and not realize it until I see the blister
  • We used to have a trailer hitch on our SUV. Weekly I unknowingly walked into to ball on the hitch while loading groceries. It took me MONTHS to figure out where the perfect blue circles on my knee were coming from.
  • What bothers me most is hitting my head as I get into the car. Like I’ve never gotten into a car before.
  • I thought I was in a secret fight club in my sleep lol. I wake up with random bruises all the time!
  • I used to wonder where a new bruise came from now I know! I’m so unsteady on my feet I bang into stuff all the time. It’s so common I don’t remember every bump!

Why Does This Keep Happening?

There are so many factors that could contribute to the increased bruising and wounds with MS.

I just fall more often now

  • Spasticity, muscle weakness and loss of balance are common with MS, and can cause serious gait problems and other mobility issues, such as “foot drop” or “toe drag”
  • And you may also be familiar with dizziness, or even vertigo, as part of the MS experience. Feeling as though the room or ground is spinning can certainly make one prone to falling

Half my body is numb

  • As many of you have probably experienced, numbness on body parts, or entire halves of the body, is one of the most common symptoms experienced by MSers. This is caused by damaged nerves inhibiting the transmission of sensations from the body’s surface to the brain.
  • And of course, when you don’t feel a bump or burn, it’s even more confusing to see a bruise!

My body is more prone to bruising and bleeding now

  • Some medications and that treat MS and other dietary supplements can also cause the skin to thin or lower the blood’s ability to clot, leading to an increase in bruising or bleeding
  • Additionally, there are other comorbidities, such as low blood platelet count or anemia, that can cause clotting issues and bruising

Ultimately, if you’ve ever had a friend ask you “What happened to your arm” or you’ve woken up in the morning to find your legs covered in fresh bruises without a clue, you are not alone!

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Physical Wellness with Aquatic Exercise

In the past couple of weeks, we have been looking at strategies for finding the best wellness plan for each person, whether it is watching for signs of depression, or making time for physical wellness in the weekly routine.

When it comes to finding a physical wellness routine, it can be difficult to find just the right exercises for individuals with multiple sclerosis who experience heat sensitivity, balance issues, mobility concerns, and other symptoms.

One easy way to combat these concerns, while still getting in a little physical activity is to look into the benefits of aquatic exercise.  Research that has been conducted suggests that aquatic exercise is effective for improving mobility function, cardiovascular endurance, fatigue level, muscle strength and flexibility/range of motion in individuals with MS.

The best part about aquatic exercise is that it is easily adaptable to each swimmer’s experience level and physical ability.  Swimmers who are more comfortable in the water can aim for a higher-level aerobic workout, or they can opt for a slower workout by moving around a pool, with the water providing slight resistance.

If you are looking to incorporate aquatic exercise into your physical wellness routine, keep these tips in mind:

  1. Always be sure to consult your physician or healthcare team before taking up a new exercise routine.
  2. Locate a pool or facility that works best for your lifestyle. If you need help finding a facility that meets your needs, feel free to check out MSAA’s My MS Resource Locator® or you can call our toll-free Helpline at (800) 532-7667, ext. 154.
  3. Set realistic goals for yourself in the pool. Perhaps you are hoping to improve your balance, or simply strengthen your leg muscles.  Communicate this to your healthcare team and your instructors (if applicable) to help you develop a plan to achieve these goals.
  4. As with any exercise routine or aerobics class, communicate with the instructors and trainers about your concerns or questions. You will feel more comfortable in the pool and be better set to reach your goals.
  5. Lastly, have fun! Physical exercise can feel like a chore sometimes, but the more fun you have exercising, the more motivated you are to keep doing it.

Learn more about the benefits of aquatic exercise for individuals with MS by visiting MSAA’s Online Aquatic Center.

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Ideas for Physical Wellness/Health

Do you often wonder what you can do to improve your physical health?  Many of you may have thought about how to become more mobile, flexible, or just happier about the way you look and feel.  Physical wellness is more than just exercising all of the time or following a perfect diet.  Let’s face it, we are all human; we sometimes indulge when we know we shouldn’t or we don’t keep up on our exercise when life gets busy or we aren’t feeling well.

I am a busy wife and mother of two who works full-time.  I don’t always have time to walk or exercise and, to be quite frank, I sometimes have the time but just don’t want to do it.  But I try to stay positive and not let one or two setbacks every now and then get in my way.

Did you know that there are a lot of ways to achieve physical wellness such as:

  • Staying mentally positive
  • Meditating
  • Doing breathing exercises
  • Trying yoga or tai-chi

These activities can help lower heart disease, improve brain function, lower blood pressure and increase flexibility.

They say “life is about the journey not the destination”, we all need to find the things that work to make our journey easier.  Adopting better happiness habits right away can help you feel better.  Being open to something new might make you feel happier and healthier too!

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Physical Wellness: One Part of the Sphere

We’ve talked about different aspects of wellness here on the MS Conversations blog in the past, and this month as we’ve covered topics related to depression we also wanted to touch on factors of physical wellness too, because all of the elements of wellness can intertwine and are equally important. Living with a chronic illness like MS can make it difficult at times to have control over one’s physical health because of how unpredictable and unknowing the disease course can be. However, there are pieces of physical wellness that a person can try to maintain influence over, even though MS may have other plans in mind.

Daily habits and behaviors can have great influence over one’s physical health and can include things like diet, exercise and sleep practices. With a disease like MS that can affect physical body function, maintaining consistent sleep or exercise routines can be challenging at times. It’s in these cases where people may need to get a little creative and modify/adjust practices to make things work for them. Working with healthcare professionals on symptom management strategies can help with this. Applying good habits to daily routines may improve physical health needs, especially with sleep practices. And though at this time there is no one specific diet known to influence MS and they continue to research this, maintaining healthy eating habits and a well-balanced diet can have positive effects on one’s physical nutrition. Each person is unique and what works for one’s physical health may not for another, so it’s important to evaluate behaviors and choices that can apply to your situation and what your needs are.

Another part of this physical piece includes maintenance and follow-ups when it comes to one’s care. I don’t know anyone who necessarily “enjoys” going to the doctor or hospital, but it’s one of those things that has to be done sometimes. Making sure to see your doctor regularly, notifying them if you’re having an issue or experiencing changes in symptoms are all good habits to try to enforce when it comes to your health. It’s not always an enjoyable experience having to go to the doctor or having medical tests/procedures done, but it’s a way to ensure that you’re doing all you can to keep your care in check and to maintain control over this aspect of your health. There are even tools and resources to help keep communication flowing between you and your medical team for your physical care needs. Though physicality is merely one aspect of the entire wellness sphere, it remains a vital part that contributes to all of the other elements of wellness and to one’s overall care.

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Exercise Your Face Off

By Doug Ankerman

I’m a huge advocate of exercise and stretching in the battle with multiple sclerosis.

Though I understand many of us (me included) have trouble with standing, walking and some basic movements of working out, there is one neglected area of our body we CAN exercise…our face!

Did you know you have 43 muscles in your face just waiting to be used?

Instead, we let gravity take over by pulling our faces downward.  Sagging till we look less like ourselves – and more like Droopy Dog.

Forget all those age-reducing potions and the creamy-crap you smear on each day.  Start looking younger from the inside out by toning up the muscles of your grill.

Exercising your face is goofy-fun and so easy to do even those of us with MS can do it!

I’ve put on my 80’s fitness gear to show you how…..

Make your face reeeeaaal small.  Squeeze your eyes shut.  Purse you lips like sucking on a lemon.

Then make your face big.  Big as ever.  Eyes wide.  Mouth open (Careful of flies).  And do it over and over again several times.

Scrunch your face to the right.

And take it to the left.

Do it again and again.

Wiggle your eyebrows best you can.

Puff out your cheeks.

Crinkle your sniffer.

Stick out your tongue.

Smile big.

Smile bigger.

Work your lips like you are making out with your favorite movie star.  (Mine is Clint Eastwood so I’ll rethink that one!)

You can’t go wrong because ANY exaggerated movement is great for the face.  And you’ll feel instant results.  Your face will feel tighter, firmer and toner (Wait, that’s not a word).

You can exercise your face in just a couple of minutes.  And you can do it anywhere except public places as others may think you have a tic.

Maybe as an MSer, we can’t walk so well, but we can look fabulous!

Get started now.  You’ll thank me later.

*Doug pokes fun at MS and other nonsense on his humor website at myoddsock.com. He also disappoints his family on Twitter @myoddsock.

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Sometimes Living with Multiple Sclerosis Can Get Overwhelming

By Penelope Conway

I want to talk about the elephant in the room. No, not a physical elephant, silly. I don’t think one would fit through my front door. I want to talk about depression among people living with multiple sclerosis.

Many people don’t like talking about how much a person’s life changes with an MS diagnosis or how much their life is actually spinning out of control. It’s hard facing the MS monster at every waking moment. Sure, someone living with a mild case of MS or who has a stable progression may think I’m crazy to even bring the topic up, but just because people aren’t talking about it or are choosing to hide their struggle, doesn’t mean it’s not real.

The reason depression happens is because our symptoms continually progress (meaning they keep getting worse), making life increasingly more difficult. We face things like numb body parts, fatigue, dizziness, vision loss, pain, emotional changes, decreased mobility, and lack of understanding from others. We lose jobs, friendships, financial stability and independence. There are countless challenges in every day, and as time passes they only worsen.

Personally, I have experienced changes to my body and feel them with such intensity that it’s hard to even put my disease progression into words. I can actually feel the numbness, pain and difficulties creeping up my legs, arms and my entire body as the day goes on. One day it was just my big toe that I couldn’t feel and the next it was my entire leg.

Coping with something that continues to progress over time brings on feelings of hopelessness, stress, despair, and a host of other mixed up, chaotic emotions. All I ever wanted was to fit in and have that carefree life that MS stole from me. Is it any wonder that depression happens? I mean, who wouldn’t get depressed knowing that their body was destructing from the inside, out?

There are times when it’s easy to face the challenges in a day, but sometimes it’s a battle between sanity and trying to hold on to hope for a better tomorrow. It’s when hope begins to fade and all that’s left is pain and confusion, that’s when the tears start to flow and depression rears it’s ugly head.

You may see me smiling, hear my laughter and admire my strength, but in actuality those things are covering the pain that doesn’t often get talked about…both emotional and physical pain. My smiles are real, but so are my tears. I have found that if I allow myself time to cry, the weight of everything I carry gets lighter. It’s much like a pressure reliever. I cry, vent, then take a deep breath, dry my tears and face the day. Just that little bit helps.

I also take an anti-depressant because I found myself crying all the time, even when there was nothing to cry about. I would cry over the silliest things too like forgetting a word or dropping a cup of water. Yes, me, the positive one.

I needed help and reached out to get my whacked out emotions under control. MS doesn’t differentiate between which nerves it’s going to mess with so when the nerves that help us manage our emotions short circuit, know that it’s just another part of a living with MS and that there is help out there. You don’t have to go through it alone.

If you are having a wonderful day, please don’t criticize someone that isn’t. Enjoy your day and share your sunshine with others. If you’re feeling defeated and frightened of the future, reach out to those around you for help, and if they won’t listen to your pain, questions and doubts, don’t be too ashamed to make an appointment with your doctor to talk about what’s going on.

Life may not have turned out the way you expected, but you have a story to share that can help  people cope with the unplanned and unexpected. Talk about what’s going on with others. It’s time to let go of holding on so tightly to a life that once was and start living the life you have now, today. Take things one day at a time, and if needed one minute at a time.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Dealing with Symptoms of Depression: Sports Car to a Jalopy

By Lauren Kovacs

This is kind of a touchy sticky subject for many. Depression is often brushed aside like sugar from a donut. We see it on the table and we brush it onto the floor.  It might be out of the way for the moment, but you only moved it.

MS has so many issues.  For me, I knew when the MS was changing and I could not deal.  I was losing control of my own body.  I went from a college athlete and very active to a total mess, after 18 years.

I was very angry.  I felt lost.  Something snatched my body.  Smashing plates helped, but then trying to replace the dishes I broke was too hard.

I started seeing a talk therapist and I talked a lot.  Just letting me have diarrhea of the mouth helped me cleanse my soul. Trust me, the mudslide was thick.

After about a year of just surfing the talk therapy wave, I was ready to try a tiny bit of medication.  I am not one to turn to medication, but daily crying was too much.  I was drowning in a mess and that was 100% not me.

I tried one anti-depressant and the heart palpitations and rage were so bad that I refused to try another. Six more months of daily crying was messing with my hydration. In addition, it took too much effort to apply eye make up only to then cry it off.  I agreed to try another, reluctantly.  I am very stubborn.

This particular one worked. It was just enough to help me attack the day. Before I take it, I notice I have a very defeated attitude.  After I take it, I am back in the game.  Put me in coach.

Symptoms of depression are complex, like anything with MS.  Anything weird warrants a mention to the doctor.  Telling mine was not easy. I did not like telling her about my dish smashing, but I know my “what’s the point?” comment helped her understand.

Medication or therapy may help; they may not. I find MS to be very trial and error.  What helps me may not help another, but most MS people will try something new.  Any “snake oil,” as my husband calls it, might work a bit.

Be open to telling someone your pain.  Be open to maybe trying something.  I was locked in a battle with depression that I did not have to fight.  Take a deep breath and evaluate.

Try and hold onto the MS wave.  Your body may need a bit of help.  I now have to wear a life vest in my own pool.  Yet one more thing MS took was my ability to swim.  I was depressed by this fact.  Now, it is a challenge.  I attack buoy-training head on.

Depression comes and goes with the ebb and flow of MS.  Don’t let it go, if something is getting you down.  You might need a life vest.  It can be embarrassing to need some help, but it is better than drowning.

MS folks live with constant loss.  Loss can be depressing.  I went from 60 MPH to about 10 MPH.  Going from a flashy sports car to a busted up jalopy is frustrating.  Mourning the loss of self is sad.  It can be tough to find yourself in the mud-sidle.  Keep looking.

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That Thing Nobody Wants to Talk About

You’re just sad, things will get better. You’re kinda blue today, don’t worry about it. Just take a moment to breathe and collect your thoughts, you’ll be fine. Over and over again we hear similar sentiments from friends, family, coworkers even sometimes medical professionals “everyone gets sad, it’ll be ok.” We are often very quick to dismiss the idea that the sad may actually be something more, that thing that nobody wants to talk about. You know, that thing we don’t say so that others don’t feel bad. Or that thing we don’t admit to ourselves because it makes us feel less than, or broken. That thing we push down and hide away until it can’t be hidden anymore and then it causes us shame, worry, and stress. That word that nobody wants to say out loud… Depression. While the state of mental health has become more normalized in conversation we’re still pretty quick to cast aside depression almost out of fear that by speaking the word out loud we’ll somehow cause people to be depressed.

If you’re an information nerd like I am you’ll appreciate that depression has a clinical, quantifiable definition as stated in the DSM 5 (a manual of sorts used by mental health care professionals to officially diagnosis an individual’s symptoms). While depression is individualistic, there are symptoms and time frames associated with the diagnosis of depression. But we don’t mention that there are now 8 classifications for depression. We don’t clarify that the symptoms have to be present for a specific amount of time. Nor do we stop to think that experiencing fatigue or loss of energy, a diminished ability to think, concentrate or indecisiveness nearly every day could be signs of depression. That having thoughts of inappropriate guilt or worthlessness can be attributed to depression. We’re not aware that depression can be diagnosed at any age and isn’t just something that accompanies grief, but can come on for a number of reasons or at any time.

Depression is one of those things that nobody wants to talk about because it makes us realize how little we know about mental health or how much we as a whole (not just you as an individual) are unwilling to admit about mental health concerns. While we know that everything isn’t rainbows and sunshine we somehow think that if we don’t speak about it then something won’t exist. And that just isn’t true. Talking about something like depression is a good first step to identifying and targeting the problem. It allows us to confront the thoughts and feelings we have and work with someone (a counselor, therapist or psychiatrist) to formulate a plan so that nearly everyday, becomes a few times a week, and then falls over into every once in a while. Depression… Major Depressive Disorder, Persistent Depressive Disorder, Disruptive Mood Dysregulation Disorder, Substance/Medication Induced Depressive Disorder and the 4 other diagnosable types of depression all exist and can be experienced by anyone. Let’s not let depression just keep being one of those things nobody ever talks about.

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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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