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Category Archives: Multiple Sclerosis

A Self Reflection on Multiple Sclerosis

I wish to continue putting some additional focus on Multiple Sclerosis for this month of March, 2019. I am doing this as I have not seen much in the way of social media postings, or awareness being brought. Yes, I could be living in a bubble, but I have just not seen much other than the standard groups.  MS organizations and even drug manufactures are out their promoting it but not much else that I have seen.

So, what I am doing with this posting is linking back to several past articles I have written about MS. The posts I am sharing go far back into the archive going back to maybe 2014.

The below are links to several of those postings I wanted to share with a blurb that was the opening to each of the pieces. I do hope you will find these interesting and share to help others who may find strength from the writings, or find some useful information.  One thing you will note is as I’ve written over the years my grammar and writing has improved, I hope. (smiles)

 

Suicide is Painless

This is not an easy blog post to write. I have started over multiple times as the subject is not one that people want to hear about. It’s one that many feels belong in the shadows, that the problem is all in someone’s head. The fact is, it is in their head. Their emotions are all over the place from any form of issues which includes, and not limited to, the short list below:

July, 2018… https://knightmist.wordpress.com/2018/07/26/suicide-is-painless

My Answers to 5 Frequent Questions on Multiple Sclerosis

I’m one of those people who is not afraid to take time to talk to someone about the beast that is now part of my life. The beast is nothing that is seen upon my body. You do not see a creature hiding behind me, on my shoulders or hugging my leg. Granted at times it does feel like it is hugging both legs and even my arms. The beast is called Multiple Sclerosis.

July, 2018…https://knightmist.wordpress.com/2018/07/01/my-answers-to-5-frequent-questions-on-multiple-sclerosis/

Strong Legs and a Lesson

My original plan was to write a post on a book review but then I saw something that had me change my tactics. The source too many is hated and one of the worst news sources in the world, and that is Fox News. So, what could I find from there that would have me creating a blog post? I’m sure there are a lot of ideas running in people’s heads, but I’m sure they are in most guesses wrong. The title of this post may have given an idea, but what brought me to this post is simple. Her name is Janice Dean; she is a meteorologist for Fox News and most importantly has Multiple Sclerosis.

January, 2015…https://knightmist.wordpress.com/2018/01/15/strong-legs-and-a-lesson/

Personal Insights into me and my Multiple Sclerosis

I’m not one to do year in review type of posts. I do think it is important to learn from the past and to move forward, but not live in the past. So I do not go for the end of year, or highlights type of things. Instead I noticed I have not mentioned much about my Multiple Sclerosis and what that brings to my life in some time. So, that is the point of this post, my life since I got diagnosed.

December, 2017…https://knightmist.wordpress.com/2012/12/17/personal-insights-into-me-and-my-multiple-sclerosis/

M(s)onster Awakens -A True Story

I wish I could say that the reason for the lack of content over the last few weeks was due to something new and exciting. Sadly I would be lying if I stated that as much of my lack of content has been more relating to health issues.

I’ve written about my Multiple Sclerosis before and after the survey results it was revealed people wanted to see more content around it. So this post is a glimpse of the struggles I’ve been dealing with over the past few weeks. They are health related and I have no fear exposing myself, not in that way people, to the world when it comes to the MS. Yes I am still me and got to throw out some odd humor to lighten a serious mood. It’s just who I am. I must now get back on track, so back to the meat of the post.

March, 2015…https://knightmist.wordpress.com/2015/03/30/msonster-awakens-a-true-story/

Fall and the Monster

The change from spring to the fall is one of my favorite times of the year. The leaves turn from their summer green to hues of yellow, orange, and red before they fall to the ground. It’s beautiful to see those colors as they hang from the countless number of trees, at times it looks as beautiful as a sunset. The one drawback the leaves falling gracefully to the ground, and creating a carpet of color is raking them off the yard. This brings me to the main topic of this long promised post, The Fall and Multiple Sclerosis.

November, 2015…https://knightmist.wordpress.com/2015/11/23/fall-and-the-msonster/

Dangers of First Impressions (Opinion by Shawn Micallef)

As many know a first impression is the mental image a person forms regarding another person when they first meet. This is usually is something that comes from a first face to face encounter, but today I’m sure can be formed through internet interactions were people never see each other. Well, I should add never see each other at first.

April, 2014…https://knightmist.wordpress.com/2014/04/11/dangers-of-first-impressions-opinion-by-shawn-micallef

In Darkness There is Light: Depression, MS, and Suicide

I am ending the year of 2014 with what must be my most personal of posts I have ever written on the blog. This one will get into some deep corners of my mind as I feel in sharing some of that darkness I may be able to bring some light to those who finish this long post. I say that as I will endeavor to show a positive that comes from dealing with Multiple Sclerosis (MS) and depression. I will warn that this is a lot of free flowing thoughts and grammar may be bad. The intent is in the message not the grammar and I just had to get this written and shared before I lost my nerve.

December, 2014…https://knightmist.wordpress.com/2014/12/29/in-darkness-there-is-light-depression-ms-suicide/

 

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Posted by on March 13, 2019 in Multiple Sclerosis

 

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March is MS Awareness Month

The month of March is designated as Multiple Sclerosis Awareness Month. It is why on this 3rd day of March in the year 2019 that I write this posting. I will do this in a different form from of my other postings as the point is to help brings awareness to the disease.

I will start by stating the MS is not as rare as originally thought for Americans. It was recently reported that after a 5-year study by the National Multiple Sclerosis Society that nearly 1 million Americans have the disease.  This is a major change in the disease as for the longest time it was thought to impact under a half million people.

I know that I saw some on social media applaud this change in numbers impacted. They were thrilled that the numbers were higher as it meant there would be more funding. They also mentioned how this report could help bring light to all those that suffer from the disease. I, on the other hand, understand their thinking but disagree.  I say that as considering how MS can impact people in so many different ways, I saw it as more people are going to potentially suffer.

You see, for me, MS has not been to life-changing to me, yet. I am still the same guy I was prior to my diagnosis over 10 years ago now. I have my “odd” humor which is a mixture of sarcasm, some self-deprecation, and just overall goofy as I just want people to laugh and smile. I want people to see me for who I am and not the disease that is within me.

I got to say that for me the biggest issues is the MS Fatigue that can come on out of nowhere. I mean imagine being wide awake, energy level on full, and boom your eyes can’t stay open. You just want to sleep. Your head bobs down,  you snap back hurting your neck, down it goes again and again. It’s maddening, and sometimes a dose of caffeine will help me get awake again. Other times, well glad I got some comfy furniture for napping. (yep sign of that humor here)

The other issues I get are sore legs, and arms at times. I will say, just imagine that someone is sticking you with 100 needles all on the inside of your body focusing on those appendages. Yeah, if that helped you get a sense, at times it feels like 10 times that number. I got to say it really doesn’t hurt like you think it would but it’s enough to cause quite the discomfort.

Other problems that come to light due to the MS. Well, just say I’m glad I work from home and I have a bathroom really close to my home office. Otherwise, if I was in the office we may find out why most garbage cans are plastic lined. Yeah, I know that may have been an overshare, but it’s about awareness right.

Now, I got to say I am also one of those “warriors” that will not let this MSonster take me down. You see where I live there were over 5 or more feet of snow that fell this past February. I live in a home that has multiple adults within these walls. The ironic thing, I am probably the healthiest one so much of that snow removal fell on me. I may complain about it, but really it’s exercise and a few times I know I pushed it. My legs were in pain, my arms hurt, but I did it.

I feel pride in seeing the concrete on the sidewalk and my driveway. I look around at neighbors and many of them are still snow covered and ice underneath. I will be clear I live on a corner so I have plenty of sidewalks to clear but I do it. What is my motivation to make it so clear? Easy.  I imagine someone like me who may have balance issues, or just unsure about walking in the snow. I imagine them slipping and falling on my sidewalk and breaking a bone. I mean I recently fell and if anyone saw me they would have laughed. I had to crawl up into a snowbank to get my footing back. There was pure ice under me so each time I had tried to get up, oops down again I went. This is why I go all out, I do not want someone having to experience that.

I know this is going long so let me bring up another subject quickly. It’s the awareness that is brought by celebrities going out in public talking about MS. Selma Blair was getting headlines for her courage for going to an Oscar’s Party after her diagnosis. She was utilizing a cane to be able to walk, as well.

I got to say by celebrities being willing to talk about their struggles helps to bring even more awareness to the disease. My major issue with that is there are so many others that show the same amount of courage or more on a daily basis. These are some of those near million people who have the disease. The main difference they do not have that celebrity status so they go unseen.

So, here let’s bring this all back together using that word unseen as the final point. You see, MS is can be one of those silent diseases. It is one that you cannot just look at a person and go, “They have MS”. We don’t all have canes, we do not all need wheelchairs, or other forms of transportation to get around. We put one foot in front of the other just like so many able-bodied people. The problem, inside we could be in pain. We may be exerting a lot of effort to just walk around a store. We may have handicap placards for our cars and look normal getting out. We get judged for that, but there is one thing I always want to say to those individuals. “I’ll happily trade my MS for this parking spot if you’d like.”

I’m not sure how much awareness I am bringing to MS with this posting. I am sharing at least my views and letting you into my thoughts. I hope no one got scared of getting a bit inside my head.

I’d love to share some names of those with MS that are like me, no celebrity, but I know some folks don’t even share with their family they have it. Why? It’s their choice as sadly like depression, MS can have a stigma with it.

So, with that stated instead let’s look at some of the celebs who have shared their diagnosis. Why? It’s to show you that MS does not discriminate.

Celebs with MS (Shortlist)

  • Jack Osbourne
  • Selma Blair
  • Janice Dean
  • Clay Walker
  • Tamia Hill
  • Montel Williams
  • Jamie-Lynn Singer
  • Trevor Bayne
  • Teri Garr
 
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Posted by on March 3, 2019 in Multiple Sclerosis

 

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Suicide is Painless

This is not an easy blog post to write. I have started over multiple times as the subject is not one that people want to hear about. It’s one that many feels belong in the shadows, that the problem is all in someone’s head. The fact is, it is in their head. Their emotions are all over the place from any form of issues which includes, and not limited to, the short list below:

  • Grief
  • Fear
  • Anger
  • Shame

The four simple emotions I listed above can lead to some of the most dangerous results in a person with DEPRESSION.  You will find that as I continue this I will be putting DEPRESSION in all capital letters, for the simple reason I want to draw attention to the word. I want people to realize how deadly it is not just to the person, but those around them.

You see contrary to a song that was popularized by a Movie and a TV Show, Suicide is NOT Painless. It impacts so many people in a person’s personal circle, but also those outside that circle. You see at one time many professionals thought the sphere of impact from suicide was on average six people. I have begun seeing new studies that say that the impact is much larger and I really do believe that is the case.

There are tons of arguments on what may be going on when someone commits suicide. They can be called selfish, heartless, loners, and even (by some) losers. The fact is that they let those emotions get to them and decided that was their way to end the pain. I will never attempt to get into the mind of someone who committed suicide as they all had their own personal reasoning’s.  All I can do is keep living and find a way to deal with those emotions.

Now I understand not all who commit suicide are doing it due simply from some behavioral issues, but some have diseases, mental or physical that causes them to feel that is the way out. Again, I will not attempt to get into their heads.

The fact is that many who do commit suicide are often deeply DEPRESSED and were unable, or unwilling to search out help.

I put a lot of the rise of DEPRESSION and suicide on our modern culture. We correspond over electronic devices without actually talking. A small pixel filled image, emoji, cannot take the place for a real smile, a real frown, or more importantly real tears. There are those who have gotten so used to this type of communication they cannot carry out a simple conversation if they had to.

We then add in the fact that many are told to hide their emotions. Keep them hidden do not share with each other.  If there is a problem, it’s probably all in their head. We adults can be just as horrible because who wishes to admit a child, a loved one, someone they care about has a problem. Very few as it can seem like it’s a reflection back on them for being such a horrible person. I got to say that’s bull crap.

You see, I’m going to get into my own past personal dark space here. I first and thankful for the help my parents was willing to get me. If not for them, and even my future, fiancé/wife, I may not be here to write this post. I can even say thank you to the great psychiatrist’s, and counselors I saw during this struggle.

You see I was in college, away from home for the first real time for a prolonged period. As I was away I was surely missing my family, and although a few hours away by car, they were away. This was also a period before computers where everywhere and texting was actually costly. I lost not one, not two but three dear family members within a year, and a couple just months apart. I started to struggle with my grades, fell into a deep DEPRESSION and at one point had a knife in my hand by the bathroom sink of an apartment I was living in. I looked at myself in the mirror, did not recognize the face looking back at me and realized, WHAT THE FUCK AM I DOING!

So I ended up flunking out of college for a term. I was able to get some help during that period off and it was due highly to my parents pushing me to get that help. I got back into college and even attended therapy sessions while in school. I was put on medications, I took them, and I beat it. I beat the DEPRESSION and I’ve done all I can to keep that specter in the back of my mind.  I know it tries to emerge at times and really tried when Multiple Sclerosis came calling. I, however, have really changed the way I view my life and will NOT let DEPRESSION take me down that rabbit hole again.

What I learned out of that experience is that the male myth of not showing emotions is bull. Men can certainly show emotion and talk about their emotions. If someone sees you as weak, then they are truly the weak ones for not being able to handle the truth and who you are. We have to find ways to get a circle of people who care for us, and do not let petty disagreements come in the way of true friendships.

I now go back to that song, Suicide is Painless. I surely disagree with that title as it may be to the person committing the act, but those left behind it is a pain that may never go away. The pain of being a survivor, wonder what happened, blaming first the individual, and then maybe turn it back on themselves helps no one. What can really help is to stop and be there for those fighting DEPRESSION so it does not lead to suicide. This may mean you have to admit your own failure, but isn’t that worth saving someone’s life?

I’m going to end with that open question and hopefully my own story, and this article is found to be helpful.  I have a list of Helpful links below and I do want to add a caveat on one of those links. The link on Suicide Risk Factors and Civil Liabilities is from a law firm in California that reached out to me about collaborating on a link share. I am being honest as it took time to think on if I wanted to do it, but considering the topic I felt it was worth it. If they can help get my blog post out, and I can help them then why not.

Also, I own no rights to the song, “Suicide is Painless” is written by Johnny Mandel (music) and Mike Altman (lyrics).

Useful Links

 

Two Final notes

  1. The image above is owned by me. Anyone wishing to use the image should reach out to me as it is a photo I took during a trip to Upper Michigan.
  2. I am not a counselor or phsycologist. I do not claim to be one, and suggest people use the above links for help. If you wish to know more about my struggle you can reach me by email on my About me Page.
 
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Posted by on July 26, 2018 in Multiple Sclerosis, Personal

 

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My Answers to 5 Frequent Questions on Multiple Sclerosis

I’m one of those people who is not afraid to take time to talk to someone about the beast that is now part of my life. The beast is nothing that is seen upon my body. You do not see a creature hiding behind me, on my shoulders or hugging my leg. Granted at times it does feel like it is hugging both legs and even my arms. The beast is called Multiple Sclerosis.

I have blogged in the past about it and it is something I do plan on continuing to post new blog posts on in the future. I made it easy for people to find my older posts with a category titled Multiple Sclerosis.

This post is going to go into what I consider the five most frequent questions I get when I tell people I have MS. I will warn readers that I use humor, sarcasm and at same time I can be serious. You will find that within this posting and hopefully it opens your eyes to what some, not all may go thru with MS. I know from my point of view this is what I go thru. You are as always welcome to share this post if you so wish.

  1. What is Multiple Sclerosis?

I always am tempted to go with the medical explanation of how immune system will attack the Myelin around nerve cells, and blah blah blah. I can just picture the glass eyed look of how I could lose someone going into that so I often explain it in this way.

“MS is like your computer, brain, giving orders to your body telling it how to do everything from breathing to walking. It controls so much of our body and many of those orders go thru the nerves. Sadly MS is like when somehow, and unknown, those commands don’t fully work. It causes all types of computer issues when you get a virus, and MS can cause all types of problems with the body. Sadly it’s not a virus it’s something science hasn’t figured out yet.”

  1. Did they give you a time frame on life?

This one gets me to laugh a bit. I say that as really there is no expectation on when you’ll die due to MS, if it is even the cause of your death. I mean if you think on it the moment we are born we start by taking a big breath into this world. Every single breath after that first one could be our last.

So, we have to stop worrying about when it may end but instead worry how we spend that time. Do we worry about things we cannot control? Do we let a disease dictate our life expectancy? I say NO, as for me it’s a ride and I hope to enjoy it, stay within the law, and hopefully leave a mark of positivity. If I’m remembered for anything I just want it to be that I cared, I listened and I tried to help if I could.

  1. Do I get depressed, or was I depressed?

You know, I think those I first told about the diagnosis where more depressed, and unsure what to do then I was. To me it was a part of life, and I was not going to let it change who I was on the inside. This comes from a battle of depression in my early college years. I learned so much about myself and add in psychology course I took I learned to let things go. Sure I can get upset at times, who doesn’t. The main difference is I at least have learned what to do to overcome.

The biggest thing about depression, in my opinion, is not to run from someone looking to talk. Do not judge them, the best thing we can do is just listen. Let them express their emotions, the suffering that has put them in that bad place. Let them give you hints on how you may be able to help instead of just saying they need to do this or that. The biggest step for someone with Depression is the fact they talked about it.

  1. What are some of the symptoms of MS?

This is one that is hard to answer. You see we have heard that life is like a box of chocolates as we never know what we’ll get. MS, to me, is a chocolate store. I say that as there are various versions of the disease and each has its own symptoms that can impact a person totally different then the next person.

Me I had severe nerve pain and muscle pain in my arms and legs. My arms would suddenly start contracting in on themselves and was very painful. I got to a doctor and after many tests the diagnosis came back. I still have some of the common issues that come with MS.

  • I get pain at times in both my arms and legs.
    • Some refer to this as the MS Hug as you get a sense someone is hugging you deeply and won’t let go.
    • I also get a tingle feeling in the arms and legs.
  • Fatigue is the worst one to me. You get tired and really you can’t fight it.
    • I think of it as if you stayed up for over 24 hours and body is demanding sleep. No matter how much caffeine you may take to stay awake the fatigue is going to claim you.
  • Vision Issues
    • I have had a small loss of vision within in my left eye. I can see out of it but imagine looking thru a piece of paper with tons of little holes punched in it. There will be spots you can’t see and that’s my left eye.
  • Concentration Issues
    • This doesn’t happen all the time, or too often. I believe this is why I am one who enjoys the challenge of multitasking. It helps me bounce from project to project and back again. It can be a pain though and when it’s bad, well that’s what a “To Do” list is for.
  • Others
    • There are a few other things like I’ll get some numbness in my right leg/foot at times. It’s nothing to major but it does happen from time to time.
    • Emotions can be impacted as I have found I tear up while watching a movie for no reason. It maybe something I’ve seen for years but boom it happens.
    • Bowels, well I won’t go too much into this one as don’t want people running away going…..”EWWWW”. I’ll just say that when I have to go to the bathroom, sometimes it’s important I get there. Thankfully I have not had to buy a lot of new underwear or pants. HA HA
  1. Anything I can do to help?

I do like this question but I got to say it’s the hardest to answer.

  • I mean those who ask I’d love to tell them sure, take this thing from me. However, I know they cannot and to be honest would not wish it on them.
  • I’d like to go sure, got some money I can have? I mean before I got good insurance bills hit hard. Those I have joked with about that will say set up a Go Fund Me page or something. I just can’t do that, I think it’s my pride and well I keep finding a way to make sure bills, and mortgage are covered. Granted got to say at times…….well…..yeah. (Insert a smile here ha ha)
  • What can they really do most is do not feel sorry for me. I try to lead by example. I do not want someone feeling sorry as its life. As I mentioned before I am still taking a new breath and my time has not come. We live in a world of challenges and do not let the petty and stupid guide your life. Agree to disagree and continue being a friend. Agree to know what topics may be off topic and leave them out of conversation. Most of all understand I never been one to really put myself out there. In truth this blog is my way to do that, and I know I’ve lost many of friends in my life due to this part of myself.

I’ll add that MS is like many other diseases in the world. It does not matter who you are, where you are from it will impact people of all kinds. Some are more than willing to talk about MS, and others treat it like depression and hide the diagnosis. I personally do not care how one deals with the diagnosis as long as they DO NOT GIVE UP.  I’ll end this very long post with the one quote I often say to people.

“I may have Multiple Sclerosis but is DOES NOT HAVE ME!”

Helpful Links:

**Please note all copyrights/Trademarks are owned by their appropriate person, company. I make no claims.

 
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Posted by on July 1, 2018 in Multiple Sclerosis

 

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Strong Legs and a Lesson

My original plan was to write a post on a book review but then I saw something that had me change my tactics. The source too many is hated and one of the worst news sources in the world, and that is Fox News. So, what could I find from there that would have me creating a blog post? I’m sure there are a lot of ideas running in people’s heads, but I’m sure they are in most guesses wrong. The title of this post may have given an idea, but what brought me to this post is simple. Her name is Janice Dean; she is a meteorologist for Fox News and most importantly has Multiple Sclerosis.

I’ve posted many blog posts about my struggles and issues with that disease but what I saw there had me change plans for this week. You see some viewer asked Janice Dean to stop letting Fox dress her as the skirts were not flattering on her. I got to say I have not watched Fox News in sometime, and to be honest I do not watch any major news outlet. I only saw this story due to the fact she does have MS, and I got to say she handled it gracefully. The key thing she let that body shamer know that she’s proud of who she is and those strong legs. In her response she pointed out that she was diagnosed with MS about 10 years ago, and of course told the viewer if you do not like them you can turn the channel.

This got me thinking about not just those out there that suffer with MS wishing they still had strong legs that would allow them to walk, but much more. I for one am thrilled that my relapsing MS is under control and my legs still allow me to move around. I personally know others who have lost their ability to walk and now either rarely go out, or use a wheel chair.

Now, I want to get more to the point of this posting and bring up one of the best lines from Janice Dean’s response. The line was, “you can always turn the channel”. What makes this so interesting to me? It points the most logical thing a person can do if they do not like something, and that is turn the channel. I mean she’s not breaking any laws here so if they do not like it the option is to turn the channel. The option isn’t to boycott the station, call for a national boycott or even threaten her more so she changes what she wears.

I know what I said in the last sentence seems like a leap, but that is the world we now find ourselves in. If someone does not agree with a perceived way of thinking groups will threaten, boycott, or worse cases cause harm. It doesn’t matter the political stance of a person, or group, it’s the fact they want that offending person to pay for not thinking like they do. It’s an epidemic and makes me think that there are simple options to the issue. If you don’t like it then “turn the channel”. I know not all cases are so cut and dry but really is it that necessary to create hate, and loathing.

I mean here we are as adults saying we need to stop bullying in the in children but what type of example are we adults setting. We sit behind keyboards, smart phones, social media and other devices to speak of hate. We want a business put out of business, thus destroying not just an owner that may be the issue but all that work for them. We will threaten people with death threats; put up internet pictures of death or violence. We will even cut off long term friendships for a disagreement because they do not think the right way.

So I realize I’ve come a long way from Multiple Sclerosis and have gotten a connection to bullying. It however is in away fitting that these things are connected. We live in a society that pledges that we accept the differences of others, that we should be free to think as we wish. However, we instead shout down those differing views if they do not fit a specific ideological opinion. We scream and yell at others before even taking a moment to try and understand them.

To be brutally honest, to me there is one simple cause for much of this. It’s that simple thing that helps us all connect at same time divides. It’s social media as we have forgotten how to truly talk to each other. A simple message about someone’s looks can create the need for Janice Dean to respond to shame. A simple message can bring hundreds, if not thousands, down on a person for daring to think differently. It is really easy to do so much of this HATE when you are not looking into someone’s eyes. You do not see how your actions can hurt and scar a person when you are not up close and personal.

I’m going to end this post here as I hope it gets people to think. I mean when was the last time you actually sat and talked with someone? Do you talk to friends, or family, more over a messaging device over face to face or a phone? Ask yourself what kind of examples are we adults setting for children when we take everything so personally? Just stop and think on those questions. I’m hoping this post does not create hate as it’s not the cause, but who can say. I’m asking people to stop and think and I’ll add now if I see hate coming in comments they will be deleted. I’m not one to continue the cycle but asking people to think. Even better for those things you find so upsetting instead of attacking and wishing death, try telling them you love them and hope they rethink their opinion. Let love show that it can conquer the hate by turning that hate to love over hate. If I’m lucky some will read this and realize what I am saying in this long winding post.

**Note the two links in the article will take you to an opinion piece by Janice Dean, the other an article from Forbes on the dangers of lack of human interactions.

 
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Posted by on January 15, 2018 in Multiple Sclerosis

 

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March Multiple Sclerosis Awareness Month

MS RibbonI know I promised more book reviews and those are coming. I just know that if you use Facebook and know anyone else with Multiple Sclerosis you may have seen posts stating that March is Multiple Sclerosis Awareness Month. I can honestly say I am not sure if that is a national event, or not, but I want to do my part and bring some awareness to MS.

I have not seen much in the way of awareness being brought to the disease other than those images. I realize at the time I am writing this the month has already started but I’m sure you know by now MS is something I deal with daily and want to get people to understand it more. I also want people to understand it’s not a death sentence, don’t hide, and most importantly NEVER give up.

MS is often called an auto immune disease and there is no known cause. There are theories out there that it could be genetics and environmental factors or even something from an infectious disease. I do know it’s more prevalent for those who live up North where they may not get enough sun. It’s why many doctors push Vitamin D when they are diagnosed.

I personally like to call MS the “Chocolate Store” disease as your average box of chocolates does not hold enough pieces to handle the differences possible with MS. I do believe I read an article sometime back that state there are at least 50 different problems that can lead to a MS diagnosis. So, this is why I believe the “Forrest Gump” analogy of, “Life is like a box of chocolates” doesn’t work here.

When it comes to my personal diagnosis story it started just over 10 years ago. I had just begun a new job and had instances were my arms just started to flex without me doing anything. Flexing is probably the wrong term but my arm muscles would tighten and this forced my arms to bend in toward my chest. I got to say scary and when it happened in the car as I drove to work it was time to get serious. I also had issues with severe cramping like feeling in my legs. I had thought maybe a potassium deficiency but I was wrong.

These problems required me to get all types of medical testing. The hooked up sensors to my scalp, and that glue not fun to get out of your hair. They pushed needles into my arm to test nerve reactions. The final major test that proved everything they thought might be going on was an MRI. I will say I’m not a fan of those and today need some meds to relax me or it is not happening. Either way the results came back there were these white blotches in the MRI results on the brain and even the spine. It was official I had Multiple Sclerosis.

I believe I have shared this in a past writing but I got to say I took the diagnosis in stride. I did not see it as a death sentence. I was told I had relapse remitting which is a type of MS that will come and go and for many of my years I believe I am in remission. The point is I knew I had to be positive that getting down on myself, even contemplating my funeral would not do any good. I had to think of how I want to spend my life, and I decided on staying positive. I am sure family members took the news worse than I did but I hope by staying positive and explaining to them what may or may not happen it helped them.

You see that is why we need an awareness period with MS. It’s sad but as a recent actress showed people hide the fact they have the disease. They are afraid of how people will react, how their employer may react and more importantly their family. I should avoid this analogy but it seems that people are much more willing today to come out as gay, or transgender, than to say they have MS. I realize that statement is a stretch but look around the world is accepting people’s different sexual orientations more and more. However, there is a stigma with disease like MS were people are afraid to admit they have it. I get many reasons on why that could be, but as in anything in life when you have a problem you must admit to it. As for MS I love to say, “I have MS, it does NOT HAVE ME”.

The positivity that you can find by connecting with people with MS through support groups, either online or through MS organizations are huge. They can help you find others in similar situations but not always the same. I did mention my chocolate store analogy for a reason. The key is do not be sorry, upset or give up on anyone who gets a MS diagnosis. The medicine and treatments have come a VERY long way since the disease was first found.

This is also a disease that will hit anyone from race, creed, religion, ethnicity, and celebrity status regardless of who you are. So the key to tell someone with MS is no matter what you think you are not alone and just be their friend. Reach out to those you may know who have the disease and instead of saying sorry ask them how they doing. Even better ask if there is something they want to talk about, do for the day and just be there for them. I for example do NOT want to be treated like I’m made out of eggshells.

You will find people that are ignorant, who say they care, and do not back those words up. I have seen this myself but well I like my job so will not go further. I will say my immediate supervisor, and coworkers, have been very understanding and backup what they say. Now, back to the point, those negative folks need to be cut out of your life as negativity breeds depression, and depression is a major side effect. (Mental note that sentence was really long) Ok so by now as you have been reading you have noticed I am mixing some humor within this post as that is who I am. I want people to see I am me and I have my up and down days just like anyone else with MS. I for one just want people to understand that and be there regardless of the type of day.

I hope this long post opens up some of your awareness to MS and I will close by saying much of this is based on my experience and observations of others with MS. I cannot speak for all as there is just too many versions of the disease and how it may impact someone. I will close by listing just a few of the celebrities that have MS and still are alive and kicking now and working in their trade. I’m doing this to help show regardless of who you are it’s your mindset and how you react that, to me, is the biggest help when dealing with MS.

Celebrities Past and Present

  • Jack Osbourne (Reality TV Star)
  • Annette Funicello (Actress)
  • Neil Cavuto (Fox News)
  • Montel Williams (TV Personality)
  • Jamie-Lynn Sigler (Actress)
  • Trevor Bayne (Nascar Driver)
  • Clay Walker (County Singer)
  • Teri Garr (Actress)
  • David Lander (Squiggy from Laverne & Shirley)
 
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Posted by on March 9, 2016 in Multiple Sclerosis, Personal

 

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Fall and the MSonster

 

Msonster

The change from spring to the fall is one of my favorite times of the year. The leaves turn from their summer green to hues of yellow, orange, and red before they fall to the ground. It’s beautiful to see those colors as they hang from the countless number of trees, at times it looks as beautiful as a sunset. The one drawback the leaves falling gracefully to the ground, and creating a carpet of color is raking them off the yard. This brings me to the main topic of this long promised post, The Fall and Multiple Sclerosis.

As mentioned this is my favorite time of years as I’ve always loved the cool down in temperatures and the brisk feeling of the air. The day’s sunshine becomes shorter as the progress towards winter continues, and for some the end of daylight savings happens as well. You may wonder why I said some, well not all have to suffer through the fun of the time change.

As all of this happens there are other changes that many are impacted by. In truth this is also the time of year the barometric pressure changes, less humidity in the air, and that chill gets much colder at night. These are all changes that many accumulate to easily, but for this person it’s not so easy. Yes the humidifier is broken out at home as no one likes waking to a bloody nose in the morning. (ICK) There is also the dry cracked skin on the hands and the way the heat dries out the eyes. It’s troublesome but there are remedies such as lotion and eye drops that can help for those issues.

It’s hear when I remind myself on how Multiple Sclerosis is different for each person diagnosed with the disease. If I’m asked about MS I like to remind people how in the movie Forest Gump the main character says, “Life is like a box of chocolates, you never know what you’ll get.” I may be paraphrasing a bit but that is so true when it comes to life, and for MS it’s like a candy store of chocolates. As fall hits for me it becomes a store the size of a huge mall. This means I do not know what the MS Monster will bring me from day to day.

It is one of the many reasons why I do my Halloween open blog as it gives me a break from having to write of new content. I get to relax a bit, and recharge the batteries. However, this year was one for the books as I lost nearly a full day thanks to the MS and how it handled the change in weather. I can still remember the day in question, as it was a Thursday. I was due to volunteer in at a local school in the Junior Achievement program. I got up and found myself having trouble walking. My legs hurt and my arms felt like Jell-O. There was more to my issues but thank goodness I can work from home or I’d have called in for that too. I realized at that moment I would not be standing in a class room, or heck walking into the school alone was a challenge.

You take those physical issues and add them to the one big issue this year and that is the Cognitive problems. My focus has been lacking, I’ve been unable to read much at all as I’ll start and forget what I had read. I was making notes at work for the things I had to accomplish for a day.  I found myself looking at the list many times. I could try typing a sentence and like a child with low attention span forget what I was doing. This was driving me insane and my blog suffered, hell I was suffering as I hated feeling like this.

As someone who prides himself on having a sharp mind I found myself comparing myself to those with early onset of dementia. I was getting frustrated with myself, I mean how do you do book reviews when you cannot read  paragraph before losing where you are. I was fortunate work did not suffer too much as many duties are almost like muscle memories.  The problems came when trying to engage in things like writing, or reading. I mean after I had that bad Thursday I was outside raking by the weekend so the muscle issues where short lived.

I eventually overcame the cognitive issues and was finally able to write this piece. In truth I went to something I knew would help me refocus and increase my cognitive skills. What you ask? I started playing some video games on my computer. I played several Call of Duty games and recently I have been playing Diablo III and this has been helping tremendously.  You are made to focus, and watch your surroundings in those games. If you fail to watch what is going on your character is killed and you have to go back and start an area again. It can get very repetitious as you do this. So,  you must focus watch what’s going on and learn what not to do to end up having the character die again. I felt my focus coming back and my cognitive skills returning.

This of course was all helped as the weather normalized, the last of the leaves floated to the ground and it got cold. It’s why this post was finally finished after working on it for almost two weeks. I could go into more of the issues brought on with the weather change but that is not the purpose of the post. I wanted to peel back a bit of the layer of my life to show I struggled but DID NOT let it stop me. I found a way to overcome the problems to get back to my sense of normality.

I think that’s the biggest thing I can tell people about getting a diagnosis of a disease. It’s not always a death sentence. You can feel like your world is ending, it will change and nothing will be the same again. I call BULL SHIT to that type of thinking. Life is what you make out of it and I think it’s important to work through the challenges life can bring. As for me, yes I have Multiple Sclerosis, but I WILL NOT LET IT HAVE ME! I will keep doing as much as I can and fight what it may bring at me. Yes I was down for a few weeks, to a month, but I am back and stronger for it. I found another way to refocus my energies and another way to fight the disease. I know what I went through may be nothing compared to others who have it much worse. The fact is just don’t give up to the crap that life brings.

I’m sure there are those who will read this and go, “What you complaining about, you didn’t have things that rough.” I realize that may be but to one who works to engage his mind I was scared.  So, I invite people to take what they want out of this as it may seem small to you but to me it was major. The fact is I again would not let the monster change my life. I will keep fighting against everything that the MSonter throws at me, just like I do against the negative life brings at me as well.

 

 
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Posted by on November 23, 2015 in Multiple Sclerosis

 

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