Thoughts

I’ve come to the conclusion that nobody really cares about a disease, illness or an event that doesn’t affect them directly or indirectly. Especially the rare ones.

People may care about me personally or enjoy my writing style, but that is where the connection stops.

I have some real soul searching to do before I can go on in this matter. I’m happy to say that the GoFundMe has raised $500 for research. I will gladly hand it over to Dr.Torres and his team. Other than that, I really don’t have much to say.

Have a pleasant evening.

MP

My friends….

Just to clarify, I didn’t want any one to get the idea that I was blaming my friends for anything. Without my friends, and you know who you are, I wouldn’t be alive today. I have friends that I can call brothers or sisters. They love and support me and I would and have done the same for them for years. They are family, and I thank God for them. People say you can learn a lot about someone by their friends. They have done for me what I can never repay, and they wouldn’t take it if I tried. If that saying is true, then I am truly blessed!!

Thank you and God Bless!

Matt

Time to get real. Updates Feb 2019

It seems like it has been forever since I have written about what this blog is intended. I wanted to do two things when I started this, bring attention to a rare disease and share some insight into what my life is like because of Orthostatic Tremor. Most of the time, I have given my best version of the goal. Sometimes I have failed, including going into a brief hiatus from writing altogether. Those times were not fair to me and definitely not fair to all of you who have praised me for not only for my writing, my attempt to be an advocate for OT, or for the bravery that I’ve shown by putting my life on the smallest of stages. I’m here today to state that some of that is a fraud. Yes I have OT, Yes I do share my life and feelings on a public forum, and yes I do believe I have some writing ability. What I haven’t been true to is in the sharing of my personality, my family life and the failure that I have been at many levels. While I have shared a good bit of my personal feelings, I have not shared as much as I believe I should have in some instances. I have not shared my family’s feelings towards me with this disease or my own feelings about them.

Last year, 2018, was one of the worst and one of the most influential years of my life. I had probably dropped to the lowest points of personal depression that I have ever felt. It affected most areas it has continued into the present. Hard to believe from someone whom my audience has claimed to be so positive. I do try to stay positive, but most times I err on the side of thinking things will never work out in my favor. Notice I didn’t say my family or my support group, but in MY in favor. Most of you do not know me very well. Like all people I have a side that I let people see and a side that is private. Known to only myself and my immediately family. For those of you who do know me, what you see most times is what you get. I do not sugar coat my feelings or opinions that I may have. I hate the era of political correctness that we live in these days. People need to have thicker skin. Your going to die because someone doesn’t like what you like, think like you think, say or do what you say and are doing? Surprisingly enough most people don’t care about anyone or anything unless it is directly happening to themselves. Which leads me to another point.

If you know me very well, I have an eclectic variety of interest. I am one of those people who has too much useless information, or at least that’s what I believe. One of those interest is in not only practicing organized religion, but to the history of religion and faith itself. One of the topics that has fascinated me for a long time is the origin and the discussions regarding the 7 deadly sins. These are the most vial of sins that a human can commit to their selves according to the early works of Chaucer and Dante. I will not continue on a history lesson that nobody but me would care about, so I’ll just list the seven in no particular order: Pride, Greed, Lust, Envy, Gluttony, Wrath and Sloth. I’m sure most of you have heard of at least some or all of these sins. If you don’t, Google them. Why do I or why would I think that any of this is relevant to this blog? Because, I am guilty of one of these sins and it will and has already destroy me as an individual.

Greed, yes I would like to have the finer things in life, but to be honest, I’m writing this entry from a make shift office in a dormer in my parents house. Every person’s dream. Lust, we are all guilty of this mildly, don’t lie to yourself. Envy along with greed are close enough for me. I and you have thought about having what others have. Gluttony, I love to pig out as much as anyone else, and I’m not always talking about food. Wrath, is tricky. I don’t want to harm anyone that I have come into contact with, al least I don’t think so. Sloth, we are all lazy at some periods of our lives. That leaves one, the one that is leading to and will ultimately lead to my demise, so to speak. PRIDE

So what’s the big deal. You should be proud of yourself and your accomplishments. No, this is not the Pride that we are referring to at this point. Pride, to the extent that I believe that most of the time I am right and if you don’t agree, well basically you are wrong and at worst an idiot. Sounds great for your all around great positive guy. An individual that recently, and many other times, people have said, “that Matt is such a nice guy, everybody just loves him”. Now, I’m not the anti-Christ, at least I haven’t been confirmed as yet. I love talking to people…..strangers. My family a different story. I am very tuned into shutting out the most important people in my life, my family. My friends I truly believe love me. They should, I pay more attention to them than my family, by a long shot. I have built a gigantic wall around myself, that no one can penetrate. You will not hurt me. I won’t let in to do so.

I was broken well before I started having noticeable OT symptoms. Did anyone notice that I said I was writing from my office in a dormer in my parents house? There is a simple reason for that. Since July, my wife and I have been separated. I was tossed out because, I was miserable to live with. I didn’t communicate on a personal level. I can talk to you from this blog as easy as walking down the office hall. I can have stimulating conversation with someone I just met, but didn’t have the time to talk to my wife about anything. Why would I do that? I was always the most important person in the room because I have OT and people should only worry about me and my needs. I have three great biological children. They are young and I worry that they are not as great as people think, because their mother and father can not have a 5 minute conversation about how the day went, what needs done, how are you today? My fault again. I also had a step-daughter who is 16 and I have basically helped “raise” her whole life. She can’t stand me. I was too hard on her, much more than the younger kids. I didn’t know that until I was told after it is now to late. You should be asking me how I feel, what I need, what you can do for me? Now many from the outside in my circle, make comments that she left me at my lowest point, and forgot about the in sickness and in health part of the vows. Some of that I believe is true. She was not getting the help or attention she needed, because I am the one who is sick. Does that make it okay? No, I don’t think so, but do I understand? Maybe. I think she left me at my lowest point. But, :then again if I am a terrible husband, father, and partner, maybe it makes more sense. Will we be able to mend fences? No, not completely. There are many scars and we won’t even talk very civilly now at this minute.

So what the hell does all this have to do with my OT. I think I made a few points in all this rambling. Some people (ME) who are sick with either a terminal or life long disease forget that we are not the only ones are sick. When a family member is sick, the whole family is sick. You would think that I would know that seeing that my sister was killed by cancer and died at the age of 36, after fighting for 5 years. Us sick folk are self-centered. My sister was the least that I know of, but she wasn’t perfect either. This is the Pride that is killing me faster and has made OT the boss in my life. Nothing matters if someone is not thinking about my illness. If you are not, I’ll make sure it comes up not so casual. Don’t get me wrong, OT sucks. It sucks more because people can’t always see it or don’t even believe there is anything wrong with you. But, sinful pride runs my life most of the time. What am I going to do for me today, because I might not have that many good days left. There was a bible verse that was part of mass, this past Sunday, 1, Corinthians chapter 13 that talks about love. You know it. It is from the Apostle Paul whom describes what love is in 15 simple statements. I was going to break that down, but since I have been writing for 7 hours, joke, I will save it for another time.

My long-winded point is that if you have character flaws when you are healthy, they become much more exacerbated if you are chronically ill. For me Pride has ruined my life thus far and I did it to myself, because I am more important. Sounds terrible when you write it down and read it. There are no apologies, because nobody believes you anyway. This makes it worse for me obviously and by the way that’s all that matters, my feelings.

I hope you are still awake after this book. I thank you for reading and sharing my message for myself and all other chronically ill people. That I do believe. I will get back to OT, but things need to be said.

God Bless—-Matt

M

Today’s doctors visit

My most recent conversation with my Neurologist was this morning. To get it out of the way, Fycompa is not a treatment I trust. I too am interested in the work Dr. Craig is doing within our OT group, but for me the choice is no. I want analytical data not emperical data. Although, I realize that this case could shed some light on OT and the more information out there is always positive.

My plan will continue be weight bearing exercise, cardio also, and Klonopin. I’ve been on high doses for years now and have no visible side effects. Now this could change certainly, but for now my brain is able hold all of my pharmaceutical information, plus my new venture, getting my MBA in finance. I will trust the Lord with everything else.

Short blog. Just wanted to give my reason for a treatment plan I think is best for me. I will be working on a more personal blog this weekend, God willing and the creek don’t rise. A saying of my late Grandfather.

Until next time. God bless, get physically active and forge your own path.

Matt

After shocks

Just a small blog reminder that any long term illness affects your family dynamic. In my case it affected everything. My career, My marriage, my personality. Just give people the benefit of the doubt. You have no idea what’s going on in their mind. In the case of OT, dealing with an illness that not many can see physically can wear you down emotionally.

Thank you for reading and sharing. God bless!!

Matt

Starting over….again

Hello all,

This will be short entry. I have to prepare for the New Year. Why do people always wait until New Year’s day to make resolutions to change? What’s wrong with a middle of the week resolution, say a Thursday in August? Not my point of this at all.

An update on my health. I still have OT!! I’m guessing you knew that. 1. Tremors, depends on the day. Worse, better, same? Yes. 2. Balance is becoming a bigger issue. I have more trouble running into things, such as; coffee tables, desks, door jams. Noticable difference in balance. 3. Fatigue, again depends on the day. I’m back to working out, many factors. I am stronger, no doubt, a big plus. 4. Ataxia (Clumbsiness) goes along with balance. A little worse. I knock my water over once, twice a week on average. Drop everything. 5. This one is for my former employer, who reads my blog to use against me in ADA suit. My Cognitive Function is great. 6. Meds have changed a bit, but nothing remarkable. In short, life has moved along in some crazy ways.

I will be writing more often, unless I am inspired with a big topic that needs time to ferment. I’m going to include more personal things. Day to day ups and downs. Work, family, spiritual, life issues. It is the name of the blog afterall. I’m going to restart my daily (personal) journal. Ideas may flow through. I encourage feedback, questions, challenges. I’m even open to being a guinea pig for ideas. I want this blog to help you as much as I need it to help me. I’m very excited, itching to get rolling.

Thank you for reading. Please share on different forums. Even if I’m lunatic, it will bring more exposure to OT. As always, God bless!!

M

I think it’s time I start playing ball!!

Hello Everyone. Weird title I bet to most. If you have ever watched the movie Hoosiers it may sound familiar. The star basketball player, who isn’t playing when the season starts, changes his mind when he finds a coach he believes in.

By no means do I consider myself a star blogger or writer, but I have found things to believe in and have been through a lot in the last six months, personally, mentally and physically. I plan to start writing again ASAP and I hope you will continue to read and share.

Merry Christmas, thank you and God bless!!

Trying to fight back

So you’re down.  You just received a diagnosis for a disease that won’t kill you, but one that will never go away. Or after 2 years, 10 years, or 20 years, you wake up and reality hits you in the face.  For a viable reason or no reason at all. You and you alone will have this “slowly” progressive disease until you meet you maker. Doctor’s don’t know what causes it, the current treatment can be ineffective or worse than the disease, and it’s rarity makes hope for research slim to none.  What do you do?

I’ll tell you what I did.  The first 6 months I fell into a depression. My company fired me, I gained 30 pounds, I became a recluse to my family and everything else I cared about.  I thought all was lost.  Then I found Jesus, or better yet Jesus found me.  I found the strength to improve my health, my mind and my family to a good extent.  I started writing this blog.  People seem to like it, and responded in kind.  A lot of positive things happened.  I met great people, OT patients, PT trainers, therapists, just to name a few.  My family life never did improve the way I would have liked.  This is most probably due to the fact that, it wasn’t solid in the first place. I’ve been told that this was or is mainly my fault.  Of course it takes two to tango, or in my case eight.

So, where are we now 2 years later.  Almost back at the beginning.  My weight is up again. My self-esteem is at an all-time low.  I stopped writing for a while.  Lastly my family is falling apart.  So, now what?

I started writing again.  This helps.  I’ve made a conscious effort to get back into shape.  My family, a work in progress.

Nobody’s journey is the same.  What works or doesn’t work for me, may not work for you. The one thing that has worked, is that I have given my life over to Jesus Christ with the hope that I can gain strength from within.

The point.  Everybody’s path is different and unique.  The only thing that I guarantee is that you will have ups and downs.  What you do with either is up to you.  I pray that we all find our path.

Thank you, and as always God bless!

Matt

 

Highs and Lows

I know many of the OT community experience major lows and minor highs. Those of us with a positive attitude can achieve those highs.

I am a master at hiding my lows in public. But, the lows always affect my closest relationships. My wife, my kids, and my parents get the worst from me. If I were in their shoes, I wouldn’t put with me. I’m not sure if or why they have written me off completely.

Do others see that? I can’t be the only one. My actions are going to leave me alone, with only my outside support. I often wonder if deep down that’s what I want. Will we or I ever find peace? I don’t know. Faith, hope and love. I think we need all three, but when you push one or more away, is that enough. I don’t believe it is. Why do we hurt the ones we love the most.

I see myself as damaged goods. It’s hard for me to believe that anyone would want to put up with me, so I wrap myself into a cocoon. No one can get in and I won’t let myself out.

I realize this is not an encouraging topic, but it’s what I’m feeling now. Complete honesty and real emotions, that’s what this blog will be.

Thanks for reading, and as always God bless!!

Matt