What is with my MS body???

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.

Involuntary inspiration, me???

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.

A goal without a plan is just a wish…

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.

Honesty, where are you???

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.