I occasionally deal with those that see me in my wheelchair for the first time and talk to me like I am five. “Hi, and how are you doing today?” people ask. I answer like they are two. “Wow look at the grown-up clothes that you are wearing today” I comment. That usually goes over like a lead balloon at first. After a few minutes, some people smile sheepishly and apologize in embarrassment. I believe that when non-wheeled individuals see someone in a wheelchair, they make many incorrect assumptions.

The following is difficult for me to talk about because my MS issues are more evident than other MSers. Many with multiple sclerosis have symptoms that are not visible. These hidden symptoms cause many who are not sick to distrust MSers. The ill sometimes will say that they are too weak to do something. At that point, the word liar gets tossed around like a ball in a dodgeball competition.

Wheeled individuals do not deal with the same disbelief and distrust from the unseen MS symptoms. The majority of my MS issues are conspicuously on display for all to see. I do remember my early years of dealing with the doubt that comes from some non-MSers. That being said, those of us in wheelchairs have our battles with to contend.

MS has many symptoms that are common yet invisible. Many multiple sclerosis patients battle with a lack of trust, because some individuals who are not sick have more assumptions than facts. The fact is that a MSer can be negatively impacted quite rapidly by unseen symptoms stirs doubt in non-MSers. Many times people with multiple sclerosis have abilities that vanish without announcement.

Take fatigue, for example. This symptom has no outwardly visible signals. Fatigue is a feeling and not an apparent issue. It is not merely tired from staying up too late or working too hard. This deceptive creature can cause a mental or physical lack of energy. Fatigue is a prevalent symptom that is experienced by nearly 100% of multiple sclerosis patients.

Poor sleep is another deceptive symptom of MS. This restlessness can either be the cause or the effect of issues like fatigue and depression. Sleep concerns in its many forms are common in those with multiple sclerosis. Poor slumber can negatively impact the quality of life by affecting most parts of one’s existence. This severely debilitating problem affects both physical and mental abilities. I never understood how lousy sleep could impact my quality of life until MS.

Depression is a term commonly applied to a wide variety of emotional states. These can range from feeling down for a few hours on a given day to severe clinical depression that may last for many years. In its various forms, depression is one of the most common symptoms of multiple sclerosis. From the NMSS website: “in fact, studies have suggested that clinical depression—the most severe form—is more frequent among people with MS than it is in the general population or many other chronic illnesses.”

Depression is also an imperceptible symptom to others. This unrelenting sadness can have catastrophic repercussions on one’s existence. Doctors have said that depression has the most significant adverse effect on quality of life (QOL) in MS patients. It has more of an impact on QOL than disability status, fatigue, or reduced sleep quality. Neurological damage associated with MS can cause this deep sorrow. The list of causes for multiple sclerosis depression is exceptionally lengthy.

These are just three of the most common unseen multiple sclerosis symptoms. Hidden symptoms have caused doubt of many individuals living with multiple sclerosis. Some of the non-sick believe that they must see it like a rash for it to exist.

I have spoken to individuals who have had family members not believe the struggles of the MSer. This distrust is after the strength of said MSers disappears entirely over a short period. I have experienced my energy drastically weaken in only a few minutes. However, I often wonder how a family member can call any loved one a liar.

The bottom line is this: just because you cannot see a symptom does not mean it is not there. Also, do not assume anything about an illness as you will likely be embarrassed in your ignorance. Do not be ashamed but respect what you do not know or do not understand.

“It’s better to keep your mouth closed and appear stupid than open it and remove all doubt.” Mark Twain

I was reading the backstories of some of my fellow MSers and was taken aback. I noticed that before they began their multiple sclerosis medications, they had exacerbations. These flare-ups were sometimes frequent, and often they were extremely debilitating. When these individuals started the MS medications occasionally, the exacerbations nearly stopped.

I am not sure how or why things have been going this positively for me. This is the follow up to my personal multiple sclerosis story. I always had minor stumbles, falls and occasionally an exacerbation that required steroids. In the beginning, I tried several of the multiple sclerosis A-B-C drugs. I took these disease-modifying meds for just over two years. During that time I had significant deterioration and no success in slowing the disease progression.

I began to do extensive research to find everything out there about multiple sclerosis. I was looking for anything that had been positively impactful on MS symptoms. For instance, I discovered that in Florida there was the bee sting treatment crowd. These individuals visit a bee specialist who has a personal beehive. Each visitor will get stung fifteen to twenty places usually along the spine. There was absolutely no chance on earth that I would ever go this route.

There were also plenty of diets that touted to be helpful specifically for multiple sclerosis. Just like the diets for those looking to lose weight the list of eating plans were plentiful. There were even some bodybuilders and fitness gurus that revealed that they had MS. Yet, when they began taking some product like Alans Anti Auto-immune Amalgamation, they became cured. They will then offer to sell the aforementioned product to you for the low low price of $69.99.

I did my research and found an MS supportive diet that would require the least amount of change in my eating habits. It is less of a diet and more of a lifestyle that reduced ones saturated fat intake. This lifestyle also eliminated your consumption of beef, pork and lamb in the first year. After the first year, the lifestyle requires you only to limit the use of those meats.

My continued studies also found a medication that has been safely used since the early eighties. This medication was FDA approved for the treatment of drug and alcohol addiction. The FDA approved it in much higher doses in its inception. I was confident that it was safe in much lower quantities that are required for multiple sclerosis. It was touted as beneficial for most autoimmune conditions as was proven with several studies. I found a prescribing doctor and began to take this medication in 2004 and continue to take it to this day.

I have been on this same medication for fourteen years with no adverse effects. The occasional difficulty still arises. However, ninety-nine present of these issues has been due to my taking unnecessary safety risks. My risky behavior includes things such as poorly managed seating transfers and moving when I know that my body is not ready. Although, I should know better and I do know better I do not actually do better.

Occasionally my legs jump like a first grader hopped up on excessive amounts of Halloween candy. Other times my legs stiffen up like I am a statue of a kicking soccer star. These muscle spasms are something that MS meds cannot stop. Soon I will be trying Botox for the muscle spasms in my legs. I am always searching for things that may improve my quality of life.

I also exercise in a pool three days a week for two hours with almost no negative impact. I know people with MS and other than a mom who chases her little ones around all day, most MSers do not move enough. I believe that many of them are too fearful of their disease to try.

I confess that I overdid it when I began the actual swim lessons that I started several months ago. My abilities at home were negatively affected in a significant way. Thankfully I realized this change and began to cut way back on my workout intensity. I continue to get stronger in my upper body mostly, and my swimming skills are improving. However, my positive progress never moves as fast as I would like.

So that is “the rest of the story” Paul Harvey. Fourteen years on this off-label medication and over three years of moderate water fitness. Sixteen months of more intense water training and more than five years of socializing like never before. I have not had an exacerbation in well over a decade. The one question that has been keeping me up at night as of late: is there going to be an eruption of Mount ST MS Helen? Am I overdue for an explosion? I suppose just like everything in life only time will tell.

This just in: After I received my first custom fit manual wheelchair, I began to train for a 5k in said chair. Exactly four months after I started my training I completed my first 5k. This proved to me that I could accomplish anything that I set my mind to.

The next challenge that I will attempt is the “Swim for MS.” In October I will try to swim 350 laps to raise money for multiple sclerosis. Each lap is a scary twenty-five meters equaling just over 5.4 terrifying miles. This will not only be to raise money for MS, but also be an attempt to challenge me once again. All of this is a reminder to not let fear decide what I can and cannot do. We do not accomplish anything if we stay inside of our safe zone.

These accomplishments seem small to most and for the average person they are. However, if you knew where I was five years ago or even one year ago for that matter these are massive achievements. I will be proud of this forever. Success comes from struggle. Getting knocked down means that you are putting in the effort and the winners circle is close at hand. “Never retreat, never surrender.”

Keep the faith. The most amazing things in life tend to happen right at the moment that you are about to give up hope.

Someone recently told me that I was an inspiration to them. I have been told that before, but I do not feel like an inspiration. This person explained to me that I have a great attitude. They told me that my jovial disposition despite the numerous adversities that have been in my path is excellent. Apparently, they did not read my untold MS story blog post. Life has not always been rainbows and butterflies for me especially when dealing with my MS.

To be clear, I do not feel like an inspirational person. These compliments tell me that the definition of inspiration might be nebulous. Maybe the meaning of an inspirational person is not what I think that it is. The following stories tell the tales of those who I believe are inspirational individuals indeed.

There is a soldier named Travis Mills. He came back from the Iraq war after an IED explosion incident. He was the fourth quadruple amputee that came back from this war. Everyone would have understood if he played the “sympathy card” upon his return. However, that is far from the case.

With his wife and family by his side, he now does more in a day than most of us do in several days. He talks with all of the returning veterans mostly focusing on the severely wounded. He has a fitness training regiment rivaled only by die-hard weightlifters. He also wrote a book sharing his life story and does book signings as well.

There is another man on the X-Factor named Immanuel who is physically debilitated. Immanuel was born in a war-torn country. Later as an infant, he was adopted by an American family. Even though he is ambulatory, his legs and arms are in bad shape physically. He stood on the X-Factor stage with a slight tilt and sang “Imagine” by John Lennon beautifully. Faced with all of life’s difficulties he stood up and stood out.

There is a woman Kanya Sesser who was born in Thailand. When she was born with no legs, her parents abandoned her at the hospital. An American couple later adopted her. She grew up and became a model, skateboarder, surfer, and a snowboarder. She did not let the challenge of no legs slow her down in the least.

If you saw a gentleman with no arms, you would not think of him as a guitar player. However, you would be wrong in the case of Mark Goffeney who lives in California. Even though he was born with no arms, he became a professional guitar player. He has also released an album called “Big Toe.”

There is another fellow named Nick Vujicic. He was born with no legs or arms and became a powerful motivational speaker. He speaks all over the world reminding people never to give up. When confronted with his physically challenging life he did much more than anyone would have imagined.

These are just five of the inspirational stories that help to encourage me on the road of my life. There are a plethora of stories in this world of people showing true fortitude against personal hardships. I heard it said like this: “Before you give up, think about why you held on for so long.”

If someone has been inspired by something that I have done, I am humbled by that. I suppose that I too have been inspired by people that I have met along the way. These people were also merely doing the things that they had to do to make it. Life threw a monkey wrench into their lives and they regrouped and reengaged their target. They then accomplished their goals.

If you can’t find the inspiration be an inspiration.

I have been pondering periodic pithy peregrinations as of late. Before I embark on one of these journeys, unexpected arrangements must be made. For a person not living with multiple sclerosis preparations for a trip is an effortless endeavor. When making the same provisions for a MSer it is crucial to be meticulous.

In 1910 Lieutenant General Baden-Powell started the Boy Scouts of America. The motto that he used was “Be Prepared” yet it is not just the Boy Scouts who use this motto. In this MS life that is full of uncertainty and ambiguity, we must be ready for anything. Our every move must be considered and carefully thought out. It is true that everyone would benefit from planning for an extended outing. However, the mismanagement of time for a Non-MS individual may cause a minor inconvenience.

On the other hand, for a MSer time miscalculations can cause extremely adverse outcomes. When I take a trip anyplace, some key factors need to be addressed. The length of time and reasoning for said travel changes everything that I do to prepare. All aspects of packing, planning, and scheduling have to be modified depending on the goal of the excursion. Of course, it changes how much clothing, medical supplies and other necessities that I will pack. I even need to plan more specifically if I am visiting a person or if I am visiting a place.

It is essential that I keep the weather in the forefront of my mind. I need to focus mostly on the temperatures. Will it be hot enough for my cooling vest? Do the low numbers on the thermometer demand a winter coat and hat? No matter if it is rain or snow it is essential to prepare for any precipitation.

If this will be an overnight trip, then there are other issues to examine. The amenities of the room that I will be staying in are definitely of significant concern. The bed must be lower to the ground. It is essential for me to be able to pull my wheelchair next to it and transfer to and from the bed safely. It is a requirement that there is a shower chair with a back wherever I bathe. The last mandatory item for the bathroom is an ADA height toilet. I also need plenty of space next to the said toilet for me to have wheelchair maneuverability.

A map of the area is a valuable tool to have. Do I know where the closest hospital is compared to the place that I will stay? Where is the location of the nearest pharmacy and what are the hours of operation? Since we all like to eat what is the locale of the non-fast-food restaurants?

It is important to note that all of this may seem overwhelming to the inexperienced individual. However, my wheelchair felt awkward in the beginning too yet it is now second nature. In most cases, one phone call can resolve many issues all at once. Not to mention that in this connected world of Google on smartphones a search for this type of information is simple. Finding this information is like playing hide and seek with a four-year-old it takes minimal effort to find.

If you fail to plan, then you plan to fail. Even Santa Clause makes a list and checks it twice. I’m sure that the man in red made a few mistakes in the beginning. I learned to “Be Prepared” in the Boy Scouts. I was taught how those two words can rescue you in a tight spot in the Marine Corps. However, as a MSer you learn how those words can help save lives.

We must prepare and prevent, not repair and repent.

My follow-up appointment with my new civilian neurologist was changed. I was scheduled to see the doctor that I started with. However, my visit would now be with the nurse practitioner. For the purpose of this blog and her anonymity, I will call her Doctor Pepper. I have no issues with nurse practitioners I have a great one in my family. I would just like to have professional medical consistency. Multiple Sclerosis in of itself changes by the day and sometimes by the minute. Because of this eonian evolution, I would like continuity on my medical team.

I would also love to get honesty from my medical crew. I personally do not like confrontation. It seemed silly to point out the inconsistencies in Dr. Pepper’s statement. Doctor P told me that she had my new MRI but did not have the old scans to compare it to. I explained to the doc that my last scan was done at a hospital in her medical system in 2005. This meant that these old scans should be made available upon her request.

Dr. Pepper then explained how the computer system is new and she had no access to the old scans. Several minutes later she told me that I should start this new medication. This nurse practitioner explained how my new MRI showed a few newly developed inactive lesions. “I thought that you could not see my old scans to compare” I questioned. This is where her backpedaling and double talk began as round, and round she went. I just dropped any conversation about my scans and let it go.

At that point, I just reiterated that I do not want to start any new medications. Since I am currently medically stable starting new meds made no sense to me. The doctor quickly reminded me that if I was not on this MS medication, I could get worse. Without skipping a beat, I said that I could also get better as no one knows anything for sure. I felt like she was getting paid a commission for the number of MS patients that she got started on these medications. At the cost of well over $60,000 per year per patient, it would not surprise me.

Now, if you are on any of these multiple sclerosis medications, then that is excellent. I have known people who have experienced positive effects from these meds. I personally think that the benefits are fantastic. Please do not misunderstand what I am saying. I am merely stating that I have been medically stable for ten years and did not see a reason to change. You can bet your bottom dollar that if my medicine were not working, I too would be on one of the standard multiple sclerosis medications.

Multiple Sclerosis is a positively perplexing paradox. For that matter, the MS medical field itself is consistently compellingly confusing. Ask most neurologists questions about MS, and you will likely hear many non-definitive words. These words that are missing a categorical certainty consist of maybe, possibly or might to name a few. The few times that I have spoken with a MS specialist, they avoid those words unless pressed.

A comedian once said, “They don’t want to cure anything they just want to make it so that you can live with it.” Is this being fatalistic or pragmatic? I suppose that there is a fine line between pessimism and realism. I feel that it is important for me to realize that I have this medical condition. Yet, it is vital that we all find what works for us and stick with it. I cannot live my life focused on the list of “what if’s” that are out there for MS. The catalog of multiple sclerosis possibilities is quite lengthy. “I guess it comes down to a simple choice really. Get busy living or get busy dying.” Shawshank Redemption.

The Veterans Administration decided to send me to an MS specialist. This civilian doctor wanted to look at my most up to date MRI that I had. “I have not had an MRI in over twelve years,” I said in a matter of fact tone. I explained to her that my last MRI was done at a hospital downtown in 2005-2006. I then remarked that the VA has copies of these images if you cannot get them from the hospital. I told her that they should be available upon her request. She decided that she wanted to get a new MRI of my brain.

To get the most accurate results this doctor sent me for this MRI at her facility. However, in my back I have four pieces I will call them metal confetti for a more fun term. Because of these metal pieces, they had to take an X-ray before the MRI to verify the location.

I was taken into an office for an abundance of check-in questions. The clerk verified that I was the same person who was in their computer system. She did this by asking me many verifying personal questions. Things could have gone much faster if she had asked me for my state ID. I suppose that there is a reason that they do things this way and I am not privy to that reasoning. The entire session in her office lasted about five minutes.

She then handed me off to a new person who had a tiny three-walled room. This medically trained individual began to ask me a plethora of health questions. She was trying to ascertain if I was healthy enough to get an MRI. The MRI contrast chemical has been in the news recently because it has been poisoning people. She wanted to verify my health and make sure that I would not also be poisoned. These questions gave her insight to the rest of my general health as well.

Next, I was taken to the X-ray and MRI preparation area. I learned that I apparently do not weigh as much as I thought that I do. The medical staffers picked me up out of my chair and carefully placed me onto the bed. At that point in one smooth movement, one staff member removed my shorts. I had removed my shirt earlier. At the same time, another person adorned me in a hospital gown. They also took my watch and told me that they would take my gasses later. Lastly, they put an IV in my arm for the contrast chemical.

I was asked if I was cold and would I like a blanket. I said no thank you and the nurse double checked by asking if I was sure. When I said that I was comfortable, she came back with a blanket that felt like it was from an oven. I respectfully said thank you and proceeded to pull it down to my belly button and up to my upper thighs. “Is that too hot? Would you like a sheet?” she asked. “Yes please,” I said smiling. I was trying to hide my annoyance since I said that I did not want a blanket in the first place.

Then my Marine Corps training came into play with four little words: hurry up and wait. Sadly, they had no music playing, and there was no television in sight. Every once in a while someone would come in and annoy me. I say that because they would come in for twenty seconds ask a question and then leave. I was board out of my mind as I could hear their conversation happening elsewhere. I only wish that they had brought the conversation near me, alas I was not in their click.

The building that these images were taken in was an old structure. Everything definitely looked clean. However, the imaging equipment was on the lower level, and the surroundings looked dark. This is in contrast to newer hospitals that tend to be extremely bright and white.

They wheeled me through the halls and down the corridor and into a smallish room. The x-ray tech had a flat panel of some sort that was approximately two foot by one foot. Her mission should she choose to accept it was to slip this panel under my back and rump. She completed the task with ease. “Take a deep breath and hold it,” she requested. When I did, I heard a click. “Ok you can breathe now” she let me know. The image showed three pieces of this metal confetti-remember happy term. She was not sure if they would be impacted by the magnets in the MRI machine.

I was then taken back to the dark and dull area for more waiting. Sadly, I was not tired, so I could not sleep nor did I have my phone so no music, book or internet. There was only time for more waiting.

After what felt like several days I was taken ten feet to the MRI room. They pulled the bed next to the table that slides into this giant magnetic tube. She asked me what type of music that I wanted to listen to. She put headphones in my ears as well as earplugs of some sort. The final task was to put a cage over my head and glide me into this narrow magnetic tunnel.

A minute later her voice came through asking if the volume of the music was acceptable. “This session will last five minutes. Squeeze the ball I gave you if you need anything.” She let me know. Two seconds later the jackhammering sounds began. I realized that now I need that oven baked blanket. There was enough of a cool breeze in the tunnel that I could have flown a kite.

When the banging ended her voice asked me if I was ok and if I needed anything. “Can I have a blanket please?” I asked “There is a cold wind showing signs of an early winter” I proclaimed. She apparently did not have a sense of humor and quietly said sure and covered me with a blanket. The entire scan was filled with more jackhammering. Peppered in the loud banging was her voice asking if everything was ok.

All said and done the entire appointment took three and a half hours. After the MRI they moved quickly to send me on my way. Without haste, they carefully removed the IV from my arm. MS has taught me to have the patience of Jobe because nothing I do is fast except when I race a turtle. However, one of the nurses got fidgety when I put my watch on as I was not moving fast enough.

I could tell that I was not moving expeditiously enough for her as she preferred. As we walked towards the waiting area, she kept asking me if I wanted her to push me. I pulled my big boy pants on and made it to the car all by myself. I even got into the SUV with no assistance or difficulty. I was very apologetic to my dad the driver because I did not know that the appointment would take so long.

“Patience is not the ability to wait, but the ability to keep a good attitude while waiting.”

Dissolution Confusion…

I was asked: Multiple Sclerosis what is the one thing that you cannot live without? I pondered this perplexing puzzle for a few minutes. I suppose that this question is genuinely up for interpretation. Otherwise, most people might just say that family is the most essential thing in their MS world.

This question is impossible for me to answer. I cannot specify one thing alone that I could not live without. Of course, I would say, friends, church family, and family, but none of these are things as the question states. I would say that my current friends are the cornerstone of my life. The Veterans Administration is also not technically an object, but it has been vital to my existence.

As for the irreplaceable items in my life, there is a bountiful list. Let me start with my wheeled chariot. Without this magical manual mechanism, I would be bedridden and merely be waiting for the end. It helps me stay active by requiring me to propel myself from one place to another. It is essential to keep the body in motion, and my chair demands that I do just that.

My microwave helps me to keep my independence. This happens because this technology allows me to cook the sustenance that I need to stay alive. I do not have to try and see down into it meaning that my microwave cooks at my eye level. I have even figured out how to cook dry pasta and not merely reheat in it, I love spaghetti.

My smartphone and internet banking are essential for keeping my self-reliance. I am a private person with lousy handwriting. Internet banking eliminates the need for writing checks to pay my bills. It also means that I do not need to wait for my monthly statement to verify my banking activity.

My computer and smart technology are both paramount to my true freedom. When items are connected to my smartphone or computer, it means that they can be done safely. It also says that these tasks are simple to complete. The fact that they are Wi-Fi connected means that I can be anywhere in the world as long as there are internet and Wi-Fi.

Music of all genres is vital to my total well-being. With no music the silence of my house is deafening. As I roll around my house, I do not merely want the noise of the television. I enjoy the rhythmic and melodious sounds of music echoing through the house.

The community center swimming pool and my swim instructor are imperative to my life. It has been said that people do not count for this query because they are not things. However, in this case, I am putting my instructor in the category of tools and not people. The pool has made me a stronger person both physically and mentally. This strengthening ensures that my daily tasks are possible for both my brain and body. My instructor taught me how to use the pool fitness equipment to build the muscles that I depend on daily.

Although not things my fortitude and tenacity are fundamental to my existence. My attitude and ability to adapt and overcome the adversities before me have made me a better person. It has made every breath that I take exceptional and worth having.

These are just a few of the things that I cannot live without. As you can see if any one of these items were not in my life it would be a sad existence. Instead of giving one item I have shared one list so in the spirit of the question I have answered it correctly.

As a seventeen-year veteran MSer, I am sometimes asked to give advice to the newly diagnosed. Sometimes I am the one to welcome the recently initiated into the fraternity or sorority of MSers. Questions get posed to me all of the time typically asking the same queries in different forms. Is MS a death sentence? No. You have MS, how do you look so good? Oil of Olay. What now? Hold.

Then one gentleman’s query put me in a quandary. He asked: What should I expect from an MS life? I thought for a moment and came up with this answer. This is the way that I look at it, and it is my opinion. My explanation had elucidated our strange medical condition in this simple sentence. With Multiple Sclerosis you must expect anything and be ready for everything.

There are a plethora of variables that make planning for MS an impossibility. Just to give you an idea of some of these issues: age, how healthy you are and your geographic location just to name a few. Multiple Sclerosis neophytes need to know although there are many similarities there are even more differences. If you ask any ten people with MS, you will see commonalities in the indications. However, the impact of these symptoms on their lives can vary drastically.

People will gladly share their stories and how they dealt with the adversities that they faced. The problem is that you will not understand until you experience that symptom. However, even if you have the exact same sign, your body will likely respond differently.

All of that being said focus on several things in your new MS life. First and foremost keep your bodies moving! Keep as active as you can by moving anything that you can for as long as you can. No matter if it is running, walking, swimming or something in between stay in motion. I always say that if you sit still for too long, you will rust. A rusty pair of scissors does not work correctly and neither will you. I went for nearly ten years without moving, and I deteriorated so much that I am currently in a wheelchair. Learn from the mistakes of others.

Food is life, but the wrong food can be the opposite. There are plenty of MS focused diets to choose from. It is more important to pay attention to the similarities of those diets and not the differences. They all tell you to eat reasonably and smartly. Portion control is imperative just like not overdoing the unhealthy food. Although many argue what they look like health and wellness are both critical.

When something unexpected happens, do not panic! Someone has gone through it before you, and they will deal with it after you as well. Remember that life with Multiple Sclerosis is the new normal so adapt and overcome. Do not give up doing things but find a workaround for you. Wear a cooling vest or carry a notepad for reminders just do not deprive yourself of life. Take it one day at a time.

No matter what happens, keep a positive attitude and always wear a smile. When you need help, and you will require help, people will be willing to assist you if you are smiling. Grumpy Gus’s get a bitter rejection when assistance is needed the most. Learn your limitations but never give up. Live your life to the fullest using any adaptations required. Do not ruin a good today thinking about a bad yesterday, let it go.

Build a stable support system filled with family and friends who are supportive and understanding. Find a Multiple Sclerosis support group and in that group find an MS buddy. Stress and MS are mortal enemies so do not let them use your body as a battlefield. Avoid stress but if you cannot avoid it find ways to manage your stress. Meditation, music or religion might help.

These are some of the most important facts for those new to MS. Experience removes fear and builds your MS confidence. Remember: today you are better than yesterday but not as good as you will be tomorrow.

I visited a friend at his new house as he moved and wanted to show his new digs. When I was there, he had to take an urgent phone call. After he was put on hold, he looked up and asked me to feed his bird. “I’m sorry, what,” I asked. He told me to put some fresh seeds in the bird food holder. “His bowl has food in it” I clarified. He explained that the food dish has bird feed that is stale and needs mixing with fresh feed. He saw me hesitate and said, “The bird will not bite.”

He began explaining the proper procedures for feeding this pet of his. First, open the cage and remove the food bowl. I followed his directions to the letter, and the bird quickly escaped. I apologized for the next hour as we tried to capture the creature and put it back into its cage. I felt terrible even after we finally caught and re-caged this flying creature of his. I went home and slept for the better part of the afternoon as the stress was significant.

This is an example of mental stress and since we jumped around physical stress too. Stress and multiple sclerosis go together like oil and water. Keep in mind that every MSer is impacted differently by all forms of stress. I personally have flare-ups of several of my manifestations all at once. The exacerbation of my symptoms is the reason that I run from pressure. I avoid stress like a squirrel avoids the neighborhood dog.

Also, think about physical stress. When I began heavy weight lifting with my buddy, the goal was to lift a lot of weight eight to ten times. If we could lift twelve times then moving up in weight was the next step. I remember that when I was lifting weights, I dropped my body weight faster than an Indy 500 racecar.

A car accident is another example of this physical stress. The wear and tear in the few seconds of a traffic collision can do significant damage to a non-MS body. That same destruction can do untold damage to an MS body in various ways by causing severe flare-ups. Many times the stress of a car crash can awaken someone’s dormant Multiple Sclerosis.

Lifting heavy weight, dropping pounds very quickly and even car accidents are examples of physical stress. This corporeal pain can be just as detrimental to the MS body as the psychological stress. I believe that the physical stress may be overlooked because many MSers sit on the couch and naturally deteriorate. This occurs while other MS patients, rightfully so, are leery of crossing the line. This line that is not to be crossed can put them out of commission for days. Since this line can jump around like a kid playing Double Dutch, there is deeply seated trepidation.

It is entirely correct that we are all superheroes in our own way. The problem is that some of us carry kryptonite called MS with us at all times. We must decide how our bodies may handle every movement that we make. It is imperative that we choose which actions will likely put us in a long recovery and avoid them.

The truth is that I currently live alone making avoiding stress a simple endeavor. I realize and look forward to the day that I can tell my significant other that everything is ok. I am eager to show her that we can handle everything with some essential communication. There is nothing as bad as losing your cool and losing your stance just before a possible ER visit. When you are aware of the possibilities, everything becomes extremely clear.

On a different topic: The magazine that I will be blogging for is the Multiple Sclerosis Association of America. My first blog for the MSAA will be published in August or September. I have a due date of August 25th, so I will keep you up to date as to the posting. A heads up: the title is dissolution confusion. Just like when I had a book report to do in school, I will start writing it on Aug 24th. I am kidding of course as it is done! Like Gomer Pyle used to say: surprise, surprise, surprise! Any younger readers will have to look up Gomer Pyle and his catchphrase.