The murderer deep within…

I often get questions from strangers about my multiple sclerosis and even my wheelchair life.  I do not mind answering the inquiries people have because the only way to learn is to pose queries and get the FACTS.  I fear the alternative, which is that people will assume and fervently spread these untruths everywhere.  These are the most common questions people do not hesitate to ask me while in public.  I felt this blog entry would be a good time for a question and answer session to help my readers understand me.  Please be aware that these responses are mine alone, and no one should compare me to any other MSer or wheelchair user they know.  As I said in a previous post, all people with disabilities are exactly different, so we are consistently inconsistent.  After twenty years of battling MS I feel I am killing it.

Why are you in a wheelchair?  I am in a wheelchair because I love the handicapped parking.  The real answer: I was diagnosed with multiple sclerosis in 2001, which has negatively impacted my legs since 2012.

Will you get better and go back to the way things used to be?  Currently, there is no known cure for multiple sclerosis, nor is MS a death sentence.  The only thing I will do is continue eating relatively well, exercising, and living my life to the fullest. 

How did you feel the first time you went into public with your wheelchair?  I was full of shame, embarrassment and I felt that everyone was looking, staring, and judging me as if my picture was on a wanted poster.  However, that is no longer the case.

What are the frustrations along your day?  There are devastatingly disheartening developments to my MS and wheelchair day quite often.  The most significant issue is how every part of my day is simply significantly slower, making the idea of rushing or spontaneity as likely as seeing a live purple unicorn.  I usually feel like a turtle on his back, often struggling to make simple moves.

Are people compassionate or insensitive towards you and your wheelchair?  I would say you have those who are kind or sympathetic and always willing to help.  However, occasionally some individuals hate themselves and want to tear down others to make them feel as bad as they do.  I let negative comments roll off like water off a ducks back and use my reply to say something positive or simply smile.

How do you feel about people touching your wheelchair?  That depends on the situation and the person, like are they, friend or stranger.  I have seen strangers act impatiently push my wheeled cohorts chair away because they could not wait twenty seconds till my friend rolled away.  I will not hesitate to speak up and even run over their toes.

What are some things you used to take for granted that is more difficult now?   I would say moving through life, I did not have to think before my seated situation started.  Now I have to think and plan where I am going asking questions like is it accessible?  There are so many questions I must answer pre-event now.

Do strangers ever stare at you or ask you strange questions?  Some people do stare, but I smile a lot and say hello, which sometimes sparks conversation.  In the beginning, I would occasionally get odd questions, but I do not mind.  I prefer they ask rather than assume as it is better to spread facts, not falsehoods.

Do you get mad when you see people who are ambulatory be lazy?  Sometimes, I have a few pet peeves, like how some individuals shuffle and do not pick up their feet when they walk is a big one.  It drives me bonkers, but I keep it to myself and say nothing when I see or hear it.

How do you feel when someone says you’re an inspiration? Here is the thing it is all about timing.  Let me explain: if you meet me on the street and in a few seconds you say I am an inspiration, in my opinion, you are just pandering.  Give me a chance to earn that word and not merely because I got out of bed this morning.  Genetics does not make me an inspiration.  To be honest, it makes me feel like you are actually saying, I am so happy I am not in your shoes like I am less than.

As a person with multiple sclerosis and in a wheelchair, I hope this shows I want to be just another person.  I do not wish to be treated with kid gloves or talked down to like a kindergartener trapped in an adult body.  You may use your legs to ambulate, but I use my arms to propel through life and merely want equality like everyone.

I use a wheelchair.  It is not who I am. It is just how I get around.

Busy as a bee…

This blog is one I did for the MSAA talking about finding things to do during this lockdown.  It is easy to get sucked into the seductive siren summons of the TV as monotony turns into inactivity.   We need to mix up our activities and avoid watching our bellies grow into an unruly beast.

We need to use every possible way to shield ourselves from the detrimental impacts of boredom.  Here are some key ways to armor ourselves from the aggressive onslaught from the apathy of life.  It is difficult not to be tempted by the alluring song of the couch and the TV’s hypnotic flicker.  The following tips may seem foolish and utterly superfluous but could help you find ways to keep busy and even boost your overall wellness.

When considering things to avoid lethargy, you do not necessarily think of food, but you should.  Wait, do not skip this blog, but hear me out!  This blog entry is not just a list of things to do to fight the sedentary life though that sort of thing is coming.  During this global viral pandemic in which we are immersed, it is essential to be aware of our food intake.  We do not want downtime to be a growth spurt for our midsection.  Since we are in lockdown at home, it is essential to eat for our activity level, meaning low physical activity equals consume smaller portions. 

All of us need to keep our bodies moving.  When the stay at home order was set, our worlds shrank to our houses’ size, requiring us to get creative.  It is imperative not to sit on the couch and watch television eating bonbons until the order is rescinded.  We must dig deep within us and gather all of the motivation we can muster, and fight the urge for a sedentary sabbatical.  Walk down the street daily, use soup cans for weights, or even do chair Yoga all, so you will not let the temptation of torpidness win your affection.  They are not kidding when they say a body at rest tends to stay at rest as muscle deterioration begins quite rapidly. 

Learn the importance of time management during this nothing is going on in life.  However, time management means fighting any urge to do nothing and schedule events to avoid life’s emptiness.  Plan time so you are not getting bored doing anything and keeping your mind and family entertained.  If you have little kids or grandkids, create game time with them to keep all of you busy and other times have time just for you.  Use Zoom, Hangouts, or Facebook to video chat with them so you can enjoy games or arts and crafts with them. 

To alleviate boredom has always been a pretty paramount practice to help MS patients or anyone.  However, now that we are in isolation, we can quickly get on each other’s nerves causing physical difficulties like never before. Remember, there is a symbiotic relationship between family togetherness and personal alone time.  To keep our brains active, we need to find and nurture both relationships, like a five-year-old who just skinned their knee.   

Think smarter, not harder.

New Year needs new effort…

Now that we have rung in this New Year and flipped the digit to enter into this New Year, we need more. We should desire something to make us stand out from the crowd as it is too easy to vanish into obscurity if we do not evolve. In life, no challenge should define us like struggles do not say who we are as they are just a blip in our timeline. Every year we should grab the tree of life, and with all of the strength, we can muster and shake it. So if you have a lot of power, then rock and rattle it until branches crack, or if you have less vitality, vigorously shake the leaves and say I am here. We must not merely survive this game called life, but we must thrive like a cactus in the hot desert sun.

The key to finding the new thing that will change your outlook on life is to consider your limits. You should stretch slightly past your comfort zone to prove to yourself that you can do more. Find something you have never done or are not particularly good at, as studies show this builds your brain. Find your neighborhood community center and look into taking some classes involving art or cooking. If it is age-appropriate, find a senior center, check out the schedule, and make new and possibly lifelong friends. There are plenty of events for the low and even mid-speed MSers if you are willing to pinpoint and participate.

For those looking for high octane options, there are a plethora of them from which to choose. Adaptive sports have become a massive industry as no one likes to being excluded because of their life’s limitations. We have come so far in technology that what was once impossible is now conceivable. Great minds have gotten together and figured out how to make things work correctly, specifically for the disabled. We have all heard the phrase; there is an app for that. Now we can say there is an adaptation for that.

Adaptive sports include things such as surfing, kayaking, skiing, skydiving, and the list goes on and on. No matter your talent level and abilities, you can ride a bike with a handcycle. If you have the required skills, you can even whitewater kayak. If you are willing, it is not out of the question to snow ski in Colorado with the best of the best. For these sports, you are limited only by your willingness to act and what the imagination can create.

I have always said: do not tell me that I cannot do something because, with time and effort, I will find a way to make it happen. I was challenged to do a 5k in my wheelchair, and even though others doubted that I would complete it, I was successful. Some said that I could not do two and a half miles of swimming, yet I blew that challenge out of the water, and I swam eight grueling miles. There may be obstacles in your path, but you decide to allow them to stop you or not. The question becomes, how badly do you want it, and how much are you willing to sacrifice to accomplish the goal? So get off the couch and pick up your feet, cane, crutches or get behind your walker, even sit in your wheelchair and do something new for the New Year.

Do not let multiple sclerosis stop you; do something despite it.

odd optical object…

eyeAt an annual eye appointment, I brought up an annoying eye issue. At the place where my two eyelids meet, there was a raised spot on my skin that would periodically prickle. This itchy issue was not a significant concern for me, but I wanted to mention it just the same. The doctor wanted to get a closer look at it because I rarely bring anything up, meaning this might be important.

The first machine to check out my eye was in the room as they use it generally for various reasons. Perpetually probing the pressure of the eye is this mechanism’s primary purpose. The system of parts also allows the doctor to see excessively close to your eye to see deep into your windows of the soul.

While the doctor was looking at my eye in the proper place, he looked at the entire eyeball as well. He figured that while he had me under the microscope, he might as well view my viewer in its entirety. The medical guy noticed a small blemish on the left side of my right eyeball and wanted to get a close-up photo for a more detailed look. However, he still needed a better portrait of my peepers, meaning a new camera was in need.

pressureDown the corridor, and in the next hallway, there was a small room with a machine that looked similar to the previous device. The tech asked me to set my chin on the metal plate while resting my forehead against a white plastic band. While I was in this position, the photographer tech was viewing my eyeball close-up. This chore allowed him to take photos while looking at everything on a computer screen. These images showed extremely close pictures of this minuscule blemish allowing a better look at this optical occlusion. Sadly, this seemingly infinitesimal imperfection was not evident, and a better set of images were still needed.

The third device was a camera that gave elevation images to see just how raised this mini macula was. I explained several times that I could not feel this raised deformity and that it did not seem to impact my vision. They still required a photo showing the altitude of this insignificant disfigurement.

After all of these photos of my slight sight blight, they still had not concluded. My eye doctor took a few minutes to talk with another eye doctor, and they determined that I needed an ultrasound. My medical professional let me know that one day per month, the Veterans Administration has an eye specialist who visits. They would set an appointment for me on that day, and I would receive an ultrasound. This scan would hopefully discover what this bio blotch indeed was.

birdI sat in the waiting room cautiously optimistic of my appointment with this visual virtuoso. I was expecting the specialist to arrive in a chef’s hat and not a lab coat to slather this cream like peanut butter on my eye. Between our conversation and my imagination, I was misinformed enough to let the trepidation settle in. Every other thought vanished from my brain box except for the idea of this thick cake icing smeared over my eyeball. The longer that I waited, my heart began racing like the wings of a hummingbird after a triple shot expresso.

I was taken back to the room for the ultrasound and noticed that there was an old style dental chair waiting to meet my seat. The tech assisted me in getting into this chair and set it back and pulled out a microphone sized wand connected to a long cable. The end that was placed against my eye had a plastic looking dome at the end that held a small amount of the belly jelly. After the two doctors and three techs completed the shop talk about what they saw, I was brought into the conversation.

ultrasoundThe ultrasound showed an unexpected benign cyst that was not of consequence to me once they used the word benign. The medical crew could not give a definitive answer on what the ocular obtrusion was. However my doctors plan to keep an eye on it, pun intended, with as needed future ultrasounds. It is also the case for the itty bitty on my eyeball. So I can rest assured that I am not losing an eye or going blind anytime soon.

No one ever injured their eyesight by looking on the bright side.

How to spot a fake disabled person…

If you are reading this post to find out the clues I can teach you so you can spot that faker, then read on.  You saw a person park in the handicap space and walk inside unassisted, so you want to call them out.  You might have observed an individual use a wheelchair one day and a cane a few days later, and you want to bust them.  Well, the truth is: LEAVE THEM ALONE

People with disabilities can have physical challenges that are not visible yet cause struggles you could not imagine.  But unfortunately, sometimes, they are attacked by a self-entitled morality vigilante that assaults them verbally or worse.  I have heard of these onslaughts to be demeaning notes left on a windshield or a vicious verbal violation that left my friend in tears for hours.  This abuse was after she felt exceptionally jubilant because her illness had her bedridden the previous four days, and she was finally walking.

Just because you see a person using a wheelchair one day and a cane, the next only shows that disabilities change.  The pain level or physical abilities could be high one day and drop like a rock the next day.  When you see that person park in the handicap spot and walk in the building with no mobility aid, they could have a heart condition.  These invisible symptoms can be as numerous and varied as fish in a lake, meaning: LEAVE THEM ALONE!

The truth is I have heard whispers of a widespread scam of people faking disabilities, and it is simply not true.  I heard one person say they let these fakers know they are seen so the real disabled can park there.  I then asked him what an individual with a disability looks like, and without giving him a chance to respond, I stopped him.  I explained he might have good intentions, but in fact, he is probably about to ruin someone’s day.  A person with a disability cannot be spotted in a crowd like a guy wearing a fluorescent ball cap.  Some people with disabilities stand out because of a medical device like a walker, wheelchair, or oxygen mask.  However, many have unseeable disabilities that need your support not your condemnation and criticism. 

The ignorance of society and the way entitled people can treat others simply makes me sad.  To all those who do not have enough in their lives, making them want to criticize others, I say STOP!  Live your life to the fullest and let others do the same because what you think you see is not what you actually see.  If your life is that empty, find a hobby and spend every bit of your time controlling every aspect of the said hobby.  Most importantly, since you know nothing about strangers’ lives, allow them the peace to live their lives as well.  Everyone should make this a topic of conversation with friends and family as the truth needs to be shared.

You may think you know, but you have no idea.

Medication Marathon madness, part 2 …

I waited six months to consent to the doctor’s first time, saying the words wait-and-see-approach.  After the six months of degradation, I began my research, learning what I could about the MS medications.  I was puzzled when I read in 2001 how the MS meds all had success rates that were below fifty percent.  In other words, I would do better flipping a coin to treat my multiple sclerosis.  I then learned that the pharmaceutical companies make the rules about what passes and fail during their own meds’ clinical trials.  This disturbing information made me question everything about the intentions of big pharma.

After learning this information, I decided to change my research goals to find how others successfully treated their MS.  I found a plethora of people who reportedly had a cure for MS or others who managed their MS in various out of the box methods.  I read about everything from bee stings to witchcraft and how others preached how their treatment methods slowed the progression.  I would try witchcraft before I would purposely be stung by any stinging creature, just for the record.  Although many said they had a cure in actuality, there was no known cure.

I searched the web reading MS forums and research articles and stumbled upon a medication called low dose Naltrexone, LDN, for short.  LDN was FDA approved in the mid-’80s in much larger quantities for drug and alcohol addiction, so it was obviously safe.  I found a significant amount of trustworthy information that was not merely one guy who had a friend who got cured by drinking some special tonic water.  I found thousands of people in various forums who successfully took low dose Naltrexone to impact their MS positively. I also read about low dose naltrexone in medical papers and heard some doctors praising its benefits.  www.lowdosenaltrexone.org

I spoke with some who were taking LDN for other autoimmune diseases, like Crohn’s disease, with favorable results.  The more reading I did, I found medical papers and studies that showed benefits to those taking LDN for HIV and cancer.  There was also a very well educated Ph.D. pharmacist and various doctors who seriously understood the ins and outs of LDN. There was so much positive information in forums and research papers that it was impossible to be a scam just to make a quick buck from the infirmed.  https://pubmed.ncbi.nlm.nih.gov/17222320/

I quickly recognized the number of disbelievers who were against LDN.  Those who were vociferously against it were probably somehow in the pockets of the drug companies.  Big Multiple sclerosis pharma can easily make sixty thousand dollars a year from one MS patient’s medication cost.  Multiply that by one hundred thousand patients, and you get six billion reasons for them to be emphatically against anything else or even finding a cure, in my humble opinion.  An estimated one million people living with multiple sclerosis in the USA alone allow big pharma to pay, I mean, support the MS Society and other MS organizations.

Drug companies have employees who sit on the boards of and also financially support these MS organizations.  Sitting on the boards, they can influence and, in turn, control the way things are run.  They do this to encourage all MS patients to comply and simply take the big pharma costly mediations.  There is no way to calculate how much money this corrupting behavior creates correctly. Drug company employees who sit on the very boards of MS agencies who serve the MS population are a massive conflict of interest.  Doctors get paid handsomely to give speeches and to promote and recommend these drugs to their patients.  This is according to a doctor who shared the information with me after he turned down their lucrative offer.  These details gave me some inside information as to the untold truth about Big Pharma. 

The MS Society 2001 annual report showed that only a small percentage of their income goes to research to find a cure.  Sadly, I thought their main objective was to find a cure, but I guess I was wrong.  I also learned that drug companies do not do the research themselves that find these medicines.  Independent laboratories funded by our tax dollars do the research that finds the medications.  Afterward, the drug companies buy the finished product, mass-produce it, slap a hefty price tag on it, and rake in billions.  This practice is how the top three pharmaceutical companies made over a billion dollars last year alone (2019).

After two years of physical deterioration, the doctor finally changed my medication to Rebif, less effective in his earlier words. However, I soon decided that LDN was unquestioningly for me, so my new quest was to find a doctor to prescribe LDN. June 20th, 2004, I stopped my Rebif after one month and exclusively began LDN 3 mgs for thirty days and then started at 4.5 mgs.  I had a few symptoms that got better, but they were newer issues.  The primary goal of LDN, just like all MS meds, is to slow progression, which it has done and has not weakened my immune system.

LDN has been approved and on the market for at least thirty-six years, making it extremely inexpensive and safe.  It is mailed to me in Ohio from a compounding pharmacy in Florida, and my last bill was $101.00 for a three-month supply, including shipping. This $33 monthly cost not only means it is affordable, but big pharma cannot make money from it.  LDN is inexpensive, and it works, causing the pharmaceutical companies to despise low dose Naltrexone seriously. 

I have been on LDN now for sixteen years with the success of having none of the progression I had before I started.  I plan to continue taking low dose Naltrexone until there is a cure for this beast called multiple sclerosis.  That is a funny statement since, to me, a cure is as likely as me falling off the top of Mount Kilimanjaro.  Tanzania and its majestic mountain are 7940 miles away, meaning I will never see its basecamp, let alone fall off the top.  I wish greed and money were not such a corrupting force, and empathy and love for our fellow man were more important.  However, the power of money reinforces the corruption of this and other aspects of society.  In other words, power corrupts, and absolute power corrupts absolutely.

Addendum: I found this information too late to put it into the story:  It appears that Big Pharma has secretly realized that LDN works because now one of the newest MS meds OCREVUS operates eerily similarly to LDN.  They have taken effective and affordable medication and turned it into one that is extremely costly.  Coincidence?  I think not.

The more you know.

Medication Marathon madness, part 1 …

The following writings are my experiences with the multiple sclerosis medications that were available in 2001 and 2002.  These words may disappoint or anger some people, but as they say, the truth shall set you free.  This blog is my story loaded with the facts I attained from many months of research.  I got this information primarily from both the drug manufacturers and FDA alike.  However, I am required to say these are my opinions based on all of the facts I gathered.

My primary care doctor told me that my diagnosis was multiple sclerosis on a brisk October day.  I am not sure why the neurologist did not give me the startling diagnosis because he set up tests and read the results.  Instead, it fell to my primary care doctor to dispense the bad news because he had an established relationship with me.  After he felt this information soaked in, Doctor Cook shared that my neurologist would give me the big picture and all the pertinent details. 

The next few days were a blur, as the idea of being sick caused constant confusion because I did not feel ill.  The slurred speech issue that began my quest for answers had disappeared several months before.  I was heavy weight lifting three days a week, and my friend Mike had just started training me to run my very first 26.219-mile marathon.  I also held down a full-time job that I enjoyed, so everything seemed to be coming up roses.

A week later, I had an appointment with my neurologist Doctor Mann, to discuss my multiple sclerosis.  The doctor told me that I should stop taking the many vitamins and end or significantly reduce my weightlifting regimen.  I kept taking the vitamins as I could not waste them, and I was trying to break a weightlifting plateau, so I would not stop.  I decided against medical advice to not stop or alter my current fitness regimen at all.  I did not understand how any doctor would suggest doing no or less physical activity as they usually recommend more.  Most doctors have told me they know little about vitamins, so I was confused at his suggestion about that as well.  

I was intimidated by doctors and did not ask the plethora of questions that a diagnosis of this magnitude mandated.  I also did not know how to search the internet correctly for needed information, so my findings were typically slow.  I had even gone to a dinner for the newly diagnosed sponsored by one Drug Company and heard a lot but remembered very little.  Everything was moving so fast that I was overwhelmed and was swimming in a sea of medical terminology and doctor jargon.  

Doctor Mann started me on the MS medication Avonex, a once per week intermuscular injection.  We discussed all of the MS medications available, and he told me Avonex was my best choice.  That day, I learned all the MS medications were shots, and I feared needles causing me great trepidation.  The doctor explained that I would receive a phone call later in the week to set up delivery as there was a lot involved in this transaction.  A nurse would also be coming out to give instructions about everything concerned with this torturous treatment.

Over the next year, my multiple sclerosis had progressed enough to cause concern.  I deteriorated on Avonex even though he said it would significantly slow any progression of my MS.  I had dropped my diagnosing doctor and replaced him with my new neurologist doctor Carrol.  Sadly he left me on Avonex, which disturbed me as my body breakdown continued to prove this medication’s superfluous nature.  As my physical decline continued, my new neurologist repeatedly said we should take the wait and see approach.  I was deeply discouraged because if I was getting worse, what was the point of the stupid needles and the medication?  I also wondered what the purpose of the wait and see approach was; what on earth were we waiting for?

AVONEX FAILED ME

I waited six months to consent to the doctor’s first time, saying the words wait and see approach.  After the six months of degradation, I began my research, learning what I could about the MS medications.  I was puzzled when I read in 2001 how the MS meds all had success rates that were well below fifty percent.  In other words, I would do better flipping a coin to treat my multiple sclerosis.  I then learned that the pharmaceutical companies make the rules about what passes and fails during the clinical trials.  This disturbing information made me question everything about the intentions of big pharma.

With education this was getting real.

Blame it on the brain…

This blog is one that I did for the MSAA with the topic of mind/body wellness. There is a connection between the mind and body that most people do not realize. Do not blame it on the rain; simply blame the brain. Happy reading, and I hope you enjoy it!

Blame it on the brain…

pic 1 dem bonesThe knee bone is connected to the thigh bone; the thigh bone is connected to the hip bone, and it is all connected to the brain bone. Ok, so the brain is not a bone, but that line sounds better poetically. The mind-body connection is often ignored and overlooked, especially if there is nothing wrong. When something does go wrong, many people bury it deep in their psyche, like a squirrel hides his nuts for the winter. This disguise over our emotions can create catastrophic complications that cause the need for psychotherapy for many years.

However, we can avoid all the mess by understanding mental and physical health work together to make our bodies operate. We need to comprehend bad brain or sad body wellness has a negative impact on our multiple sclerosis. This association means if one is having a rough emotional day, they may ambulate poorly or have a tough day physically. It is essential to follow a few simple guidelines to make your mind and body wellness less a mess.

pic 2 laughingFirst, always surround yourself with jolly and jovial people who understand the importance of having a convivial attitude. Try to hang around those who are happy people by nature and do not need to force or manufacture jubilation. These individuals typically can see when you may be having a rough day and can entice laughter out of your face. With minimal effort, they can remove a slight sallow smear from your countenance before it becomes life-altering.

On the other side of the coin, fitness has not only physical but a plethora of mental benefits that make exercise imperative. Working-out promotes positive personalities by releasing endorphins, which create feelings of happiness and euphoria. These happy chemicals help alleviate depression, anxiety, or even help if you are simply feeling a bit blue.

pic 3 stressFinding ways to minimize your stress, anger, or frustration is necessary to help keep you cheery and physically in good shape. This pleasant personality can make a difference and may aid you in ambulation throughout your day. It is crucial always to keep an effervescent attitude so people are more willing to help you when you are in need.

I find periodic purposeful pleasure in all forms of music, giving me mental wellness to take on the world. The melodious and rhythmic sounds that fill my house makes my soul sing with exuberant jubilation. Diverse styles of music from Beethoven to The Beastie Boys help my various moods keep under control. Not only do I listen to music at home, but just before I exercise to put me in a happy state and boost my fitness abilities.

pic 5 meditationMeditation is another great benefit to those who want a positive and excellent connection between mind and body. Meditation is relaxing, causing restful mental tranquility that allows peaceful slumber throughout the night. This quiet sleep is good for MSers as it enables our bodies to reboot like the PC that we have at home, giving a fresh start to our day.

pic 5 total welnesThe number of ways the mind and body are connected is staggeringly high. The key to a good MS life, such as it is, is to avoid all stresses like physical, emotional, and mental stress, to name a few. Lifting excessively heavy weights, yelling at a cashier, or anxiety over your monthly bills, are all stresses that can have a negative impact on MS. In effect, this relationship will likely have us sliding down a dark MS symptom hole that is difficult to recover. When stress starts getting you down or your body isn’t operating the way you desire it to fall back on my suggestions. Utilize the ideas I have shared and give you the tools for a better attitude and a great day. Remember: you have multiple sclerosis; it does not have you.

De-stress for de best MS life.

Scott Cremeans lives in Central Ohio. He is a US Marine who was diagnosed with RRMS in 2001 at the age of 27. Scott has successfully managed his MS symptoms on his own with his faith, friends, and funnies. You can read more about his MS journey by visiting his blog http://www.myramblings.blog where he muses about life in the slow lane with his literary wit.

I was wrong about MS…

For one to become a family doctor, they need a lot of schooling.  However, to learn a specialty like neurology, there is even more training required.  Doctors go to school and go through a residency program for ten to fourteen years to become a primary care physician.  Yet, to become a neurologist, you are looking at several extra years of learning in addition to the ten to fourteen years.  Some doctors have no concerns about not staying in their lanes by giving incorrect information about medical subjects they do not understand or have not researched.

After my MS diagnosis, I doctor hopped from one to the next for several years, searching for an excellent neurologist.   I received information about MS from each neurologist, and I assumed it to be accurate.  I was a novice to the diagnosis of MS, so I did not research anything I was told.  Instead, I studied diets, medications, and the success rate of both for those with multiple sclerosis.  My searching also led me down a path to seek out what non-mainstream MS treatments were people following.  For example, some MSers who live in Florida receive bee stings along the spine, no thank you, not for me.

I have heard about several MS patients who were given incorrect information about their multiple sclerosis. This situation disappointed me that a medical professional could make a statement definitively even though being wrong.  I felt sad that one of my MS brothers or sisters would be given inaccurate information.  MS facts alone make for a terrible day, and to be bombarded with Incorrect information that causes unnecessary worries makes life even more stressful.

Recently someone brought to my attention that some of the information I believed and shared with others is inaccurate.  Some of the doctors I trusted apparently gave me some incorrect data in my early days, and I fervently shared it with others.  For over a decade, I have passed out inaccurate info to everyone like water at a 5k race.  I now need to cautiously learn what part of my information is correct and, more importantly, incorrect not to spread bad facts.  Let me state unequivocally that only a portion of my knowledge is incorrect, and the rest is accurate.

Fast forward to today, I have now been researching all information received by doctors, friends, and reading material for accuracy before I pass it on.  So to my MS brothers and sisters and anyone who has received inaccurate information from me, I am sorry.  I will not be sharing any general MS info unless I have researched it myself and know it to be true.  I will only talk about my story and how MS has impacted my life and forced me to change many daily movements. Sadly I will have to rewrite some of my past blogs to correct them and change them from fiction to facts.  Thanks go to you, my friends and readers who share this journey with me, the good, bad, and the ugly.

And the truth shall set you free.

Help your friend fight…

Many people with disabilities struggle to get out of bed in the morning each day as I do.  However, this blog is not about the daily physical skirmishes, but instead a discussion of emotional conflicts.  These battles brew beneath the surface many times, carefully hidden from even the best of friends.  If you are willing to watch for a few signals, you might see the silent yet frantic cries for help and save a life or at least help soothe some internal pain.  The indicators could be subtle, but the dire desperation is begging for comfort from a friend.

Three hundred and fifty million people of all ages are impacted by depression.  If you read that line again, you will notice it does not say MS patients or even disabled people.  Anyone can experience depression, feelings of loss, isolation, and despair, making them question everything.  Sometimes this internal inquisition can include the value of their very own lives.  They often hide these feelings behind a painted-on smile that any movie hair and makeup team can only dream of creating. Look for these tell-tale signs to be the friend they need with the care they desire.

Your friend or loved one may have a loss of interest in previously pleasurable things.  Sometimes this loss of enjoyment may not be all activities but merely eliminating things that take the most effort. They may withdraw from friends and family as exemplified by only playing video games, sitting in front of the TV, or surfing the Web for hours and avoiding spending time with you.  Engaging with another person and meet that person’s needs require more effort than surfing the Web and may be an early sign of depression.

Sleep difficulties can easily plague your friend or loved one in several ways.  They may have significant struggles falling asleep or even staying asleep, possibly causing them to experience foggy brain throughout the day and an inability to focus.  Be aware of your friend always looks tired, talk to them, and be that listening person they may need.  It might seem like a simple sleepless night, but it could be that silent cry for help, so be that friend and a listening ear they need.  On the other hand, they may sleep extensively, finding it difficult to get out of bed and engage in normal routine activities.

Eating changes may occur, causing corresponding weight changes in the expected direction.  Eating either too much or too little, along with weight changes, can easily be misinterpreted as merely letting oneself go.  Yet this also could be a signal that your friend or loved one might have melancholy thoughts stirring deep inside.  This red flag could be the perfect opportunity for you to check-in and sincerely ask how they are doing.  Discuss their situation using open-ended questions to help them open up to you about what may be causing them distress.                                                                              

Anger and irritability can quickly come to the surface, making life a bit uncomfortable for anyone close. A depressed person battles to make it through the day, and everyday obstacles can make life downright infuriating. This action is another tell-tale sign of depression that is easy to take personally.  If this is how your friend is behaving, and it is not their typical behavior, you should take the time to help them tell their story.

Expressing negative thoughts can be another example of depression.  You may feel excited about something, yet your friend or loved one might give a downer response.  They could say something like, “What does it matter? It makes no difference” or “I don’t think that will amount to anything.”  Negative thoughts like these are a symbolic symptom of depression, and sometimes they feel almost required to throw a dampener on things.  The depressed person is not trying to make life difficult for others, even though that is often the impact of depressive thoughts and comments.  Negative thoughts and behavior can be a symptom of giving up, not thinking anything is important.

Suicidal ideas may take a passive form, such as, “I don’t care if I live or die” attitude or a more active way, such as “Sometimes I feel like driving the car off the road.”  Always take such statements very seriously.  The common myth says if a person is truly suicidal, they don’t tell others about it; they do it.  By this faulty logic, if the person is telling you about it, you might wrongly conclude that they won’t actually do it.  Nothing could be further from the truth. Not only are such statements key elements of depression, but they suggest that treatment is urgent.  Those contemplating suicide may want to give you a treasured personal belonging of theirs.  They believe they won’t need it after they end it. 

Now that you have found out how to tell if someone is depressed, here are some things you can do. Once you suspect depression, encourage your friend or loved one to seek consultation and treatment with a qualified person. This decision is not only for his or her sake but for yours as well. Sometimes it can also be helpful and comforting for you to offer to accompany the person to the consultation.

A friend in need is a friend indeed.