What does it all mean?

As I reflect back to last week’s journey to Omaha, it took me a while to process all the events, testing and interactions with the OT patients and their companions.  I’m still trying to work through a lot of my thoughts as I write.  I decided to write as if I was back in school, with three basic principles of the scientific method, with some opinion on the side of course.  They would be: 1.  What did we know before we got there?  2.  What do we know or feel now?  3.  What’s in store for the future?

So, what did I know before I went to the conference and trials.  Well, I knew that I was dealing with a very rare disease, that could affect 1 or 2 in a million, the treatment doesn’t work very well, and it normally is starts presenting symptoms in the late 50s or 60s.  It takes a lot out of me physically and mentally throughout some of my days.  I was scared for my future and the future of my family.

How do I feel or what do I know now?  When I first arrived and started to socialize with the larger than expected group, I mentioned previously that I was excited and terrified at the same time.  Excited because this was the first time I had met anyone with OT, excited to meet people in person whom I had only spoken to on Facebook or Twitter.  Terrified because I was face to face with my possible future.  People who could walk very little without assistance, some had wheelchairs, some with walkers, and some with canes.  As the week progressed, I began to realize that my now OT family was truly amazing.  The we’re not constantly depressed or down trotted, but they were some of the most amazing people I have ever had the pleasure of being around.  They were eager to share their story and listen to mine as well.  The fear factor dissipated quickly.  Throughout out the week of some very impressive technological testing that was exhausting and revitalizing, I began to come to terms that this may actually help myself or others down the road.  I felt fortunate that I was diagnosed fairly early as opposed to some people who were properly diagnosed 20 years after starting to show symptoms.  I learned that cases have been diagnosed from age 7 to 85 and may not be as rare as previously suggested. The average age of the diagnosed is around 56 years old  and the population size maybe 20 to 25 in a million.  It is still rare but that is a highly exponential sample size to what was previously thought.

So what does the future hold?  The best answer and the answer from Dr. Torres and his colleagues is,  we don’t know.  We do know that these trials may lead to better diagnosis, which can lead to more patients, which may get the attention to bigger money research.  I also know that this maybe years away.  It’s hard to say in this medical world we live in now.  Unfortunately the almighty dollar still rules at this point. One thing that I do know for sure is that Dr. Torres is extremely passionate about the puzzle of OT and he is a remarkable man other than being a fine Neurologist.  Hopefully the data collected from Omaha 2017 will keep the fire that burns in his soul for our OT family.

Lastly, I again want stress how amazing the people who I met during that final week of September.  I made some what I hope friends for life, and know that we as a group will continue to be our own advocates for this perplexing illness.  I hope to participate in trials in the future be it a year, 3 or 5 years down the road.  Until then I will continue to be here, learning and listening to anyone who may contribute to our community!

Thank you for reading, sharing and may God bless you this Sunday!!

Matt

Impressions vs Fact

As I write this evening about all the interactions and procedures I have endured the last 2 days.  Endured maybe a harsh word, because the people who have either volunteered or who are participants are beyond incredible.  I may be the youngest person at this conference, but I learned today that there have been confirmed diagnoses at the ages of 7 and 9.  This disease may not be as rare as once thought.

The technology that they are now using to test is extremely high-tech, and the data they are collecting is very impressive, but will become increasingly more expensive to gather.  They may not find a cure for OT from the data from this conference, but this seems to be the best set of trials that they have had, and I can see them getting better with every one they have in future.

Yesterday I had an eye exam that actually showed tremor in my eyes after a period of time.  I had a virtual reality test that was incredibly fantastic and terrifying at the same time.  I also had an MRI that was not your father’s MRI.  It was 45 minutes long, with no music, no sleeping and a 15 minute period where I had to keep my eyes open and “clear my mind”.  Very exhausting day.

What makes this experience so special is the people who I have met.  People who came here of their own cost and from as far away Australia. The average diagnosed age is around 56, but some of these people  have been dealing with symptoms for 30 years.  Absolutely amazing. They are as positive as they are wonderful.  I no longer feel like a victim of a rare disease.  I am now part of a fraternity of people who could make anyone feel empowered.

The feel sorry for yourself parties are over.  It’s time to go to work to raise more awareness and money for the necessary research!!

Thank you so much for reading and sharing.  As always God bless!!

Matt

 

Opening day!

If you have played or are a fan of baseball, you know what the words opening day mean to you.  The butterflies in your stomach, the expectations.  In Pittsburgh aside from the previous 3 seasons, you knew you were going to be disappointed.

As I travelled to Omaha, I will admit I felt like a rookie in a veteran clubhouse.  To my pleasant surprise, that feeling dissipated almost immediately.  Never have I met a group of wonderful and welcoming individuals.  So eager to share their stories, but also kind enough to listen to mine.  Our group may vary in age in upwards of 40 years, but in this previous evening and today’s interactions, it’s clear to me that I have a new family.

I start my testing tomorrow with 3 or 4 different exams, so I will definitely have much more to speak.  I am just so grateful that I have found a whole community to welcome me as an equal and ask me as many questions as I have asked them.  Thank you to all whom have supported me and have allowed me this priceless experience.

More to come tomorrow.  I wish you all the best and as always God bless!

Matt

Amazing

I find people to be amazing!  Most of them in a good way.  I’m always amazed and moved when people who I haven’t seen in years, message me or go out of their way to ask me in person how I’m doing.

I know I claim to be an advocate for Orthostatic Tremor.  Next week will truly give me an opportunity to take my words into action.  Myself and dozens of others will be in Omaha, Nebraska for clinical trials and or tests for OT.  I plan on not only writing about my experiences daily, but also to be listening to the people of  whom I have made connections with on Facebook and Twitter.  I hope there a chance for me to be a part of some sort of leadership in the western Pennsylvania, Ohio, West Virginia area.  I don’t know if it will happen, but I know I can’t do it alone.  I need help from OT suffers and quote unquote normal people.  I have received many requests to share what is happening in Omaha with those who can not make the trip. As I said I will certainly do that, but I want questions that you have as well.  To help be the voice of many, I must listen to voices of the few.

So don’t be afraid.  Write me, text me, tell me if I’m heading in the right direction.  Someone needs to really stand up and shout out to the masses about our struggle.  I’m not sure if it should be me, but I am eager to give it a shot.

Thank you for reading, commenting, and sharing our message.  As always may God bless you!

Matt

You never know

Not every post has to be paragraphs long, with tremendous insight.  I’m trying to help the Orthostatic Tremor community, with the help of God, by reaching one person at a time.  One conversation, one email, one text, one blog at a time.  You never know what can happen by opening yourself up, to let others in.

One thought, one heart, one smile, one kindness, and a lot faith….you never know.

God bless!!

Matt

 

Trust, with Orthostatic Tremor

Trust is a word that seems to get thrown around quite a bit.  “I don’t trust the way he’s looking at me.”  “I don’t know what it is, but I just don’t trust him.” We have trust issues with our family, with our friends, with the world around us. The older you get the more people you are exposed to, the more you have to decide who to trust or not.  Your boss, your coworkers, your doctor, your therapist, your lawyer, even your priest, minister, pastor, Rabbi, etc….

When you have a disease that is a rare as OT, trust becomes exponentially important.  First, your primary doctor has probably never heard of OT.  70-80% of Neurologists have never had a patient with OT.  The ones that have certainly had no idea of a cure or very little ability to help the symptoms. Because it’s so rare, very little if any research money goes towards OT. When my Neurologist, who actually has 3 patients with OT, goes to a conference and the only research group is one from Florida who tested magnetic therapy on a study group size of less than 25, which some of you were involved in, comes back from it and basically says you’re screwed!  There’s just no money to be made because of the limited sample sizes.  That’s one of the reasons I like and trust my Neurologist.  He gives me straight answers, is willing to try anything and work with anyone who may have information.  Me being a Pharmacist has led to some interesting combinations and dosages…none that have really worked significantly for the tremors.

So who do you trust?  Do you trust the population that really can’t tell you have a very debilitating disease unless they look very hard?  Do you trust employers who blow off your illness when a chair, stool or even something to lean on helps?  Do you trust insurance companies who again have most often never heard of the disease and really have to do some digging to find limited knowledge before they deny a claim? How about a legal system that works at a snail’s pace at sorting through all the “documents and research findings” for a “small” hourly rate?

So, who do you trust?  My answer in my very short (1 year), but seemingly lifetime of experience with OT is, I don’t know.  It’s very hard to trust anyone who can’t feel the effects of OT on your body or your mind.  No offense to anyone at any age, but when someone looks at me, a 41-year-old, 6 foot 3 inch man, in relatively good shape, they most often never give me a second look.  That is until they see me standing “still”, or leaning on a wall or grocery cart. I believe that even my family at times gets sick and tired of people asking me how I’m feeling.  My family is very supportive, but you know it happens to us all.

The bottom line is that I still have to use my gut feelings to sort out who I trust and pray and hope for better times.  The praying in the one pure thing I can trust, because it makes me feel better and I know it will always be there for me to lean on.  Let’s hope that those of us able to go to Nebraska later this year will come home with more trust and hope.

Thank you so much for reading, and for sharing my story.  I wish a great rest of the week for you, and as always God bless!!

Matt

 

 

 

 

What is wrong and what is right in this world.

If you turn on the TV, open a newspaper, turn on your laptop or smart phone, you’re bound to see all the negativity that the media, “fake” or not tries to shove down our throats.  Oh don’t get me wrong, every once in a while you get a feel good story about someone defying the odds and beating a terminal illness, or more likely a dog saving a deer from drowning.  Every day the same cycle, this side blasting that side and vice versa.  I for one am totally done with all of it.  These so-called elite 1 percenters that run everything need a dose of reality and morality.

I for one don’t care about Trump and the Russians.  I don’t care about this person or that person rigging an election that was 8 months ago.  I do care about people who have jobs, to do their jobs, whether they are the President of the United States or a person making minimum wage at Walmart.  I for one have been searching for a new job for months since my former employer terminated me because I was scared and devastated about a life long debilitating disease.  I’m not supposed to say that I’m sure.  Always finding a way to use my voice against me.

Let me tell you what I know is right with world.  I am certain that we live in an amazing time, with limitless possibilities.  This blog alone is read by hundreds of people all around the world.  I am so touched and moved by the support and encouragement that I receive on a regular basis.

People in general are good and nice and sincere.  Most just want to do what they have to do to support themselves or their families.  Why cant the elite who have the power to help everyone do that not just talk and debate over issues, but actually solve problems.  Our best and brightest, sure thing.  Same thing in big corporations, local government, and everything else where there is money involved.  Oh if I ever knew then what I now know, what changes I would make.  I’m not supposed to write this blog any more because maybe I just phrase something the wrong way or people take blurbs of it out of context.

I am an advocate for Orthostatic Tremor!!  I was put in this situation to rock the boat and gain awareness for a terrible disease that some wonderful people have the misfortune of having.  This is not for me, this is for all of us!  More money, more research and more people to give a damn about people in need.  We have a story to tell, and I will do my best to make sure it gets told.

Thank you for reading.  PLEASE share this, and as always God Bless!!

Matt

Friendship

How many true friends do you have?  Someone who is not there to judge you, someone who will stick with you through the good and the bad?  As we in the States get ready to celebrate our Independence Day with our family and friends, I got to thinking about this topic.

I’m a fairly outgoing person.  I will talk to just about anyone.  I have a lot of people who I am friendly with, but I wouldn’t call them if I was really in trouble.  I’ve said before, having an illness opens your mind to many things that you really take for granted.  My father, whom not only is a fantastic Dad is also a great friend, always tells me that family is the only ones you can truly trust.  I get what he’s saying, but man I hope that’s not true.  I have a hand full of friends that I know would give me the shirt off their back if I was really in trouble.

It has a occurred to me recently that I haven’t been the greatest of friend in the same way.  I don’t stay in touch with people like I ought to.  I’m not the one to initiate a get together or even a phone call.  I have a tendency to isolate myself at times, not just with friends, but with family too.  It took me a long time and a lot of self-realization for me to figure out that not just me, but all of us need support to get through life, illness or not.  Life is hard!  Man is it hard!  But, the more people you let in, the easier it can become.

I plan on making a very concerted effort to reach out to the close friends I have and the ones that I have let slip away.  I challenge you to do the same this holiday and moving forward.  Our creator meant for us to be together and live life free and with joy.  That’s a lot easier to do with more friends around us.

Have a great 4th of July.  Thank you for reading and sharing, and as always God bless!!

Matt

Humor and Humility

First off I would like to wish every Dad a Happy Father’s day!!  I know how special and important my father has been in my life.  I wouldn’t be half the man who I am today without him.

I have often said that I rarely pray for myself when it comes to my disease.  That is absolutely still true, but I do pray for three things to strive to achieve every day: patience, peace, and humility.

The patience part is two-fold.  One, patience with OT that is chronically always with me, and secondly, patience with my wife, children and everyone that I come in contact with.  I know how I feel and think, but no one else really does in my immediate circle.  Patience.

Peace is exactly what you would think it would be, peace in my heart, in mind and in my soul, so I am able to survive and thrive everyday.  Peace.

Then comes humility.  I have said countless times that I want to be the voice for people with Orthostatic Tremor.  It would be a great honor for me to achieve this.  It some respects​ this has happened to a small degree.  I have a fairly successful blog and made countless new relationships with people from all around the world.  So I pray for humility, that if the good Lord chooses me to be that voice, that I never take it for granted.  Now, believe me, I have no desire to become famous, but to be the voice for something this important requires a bit of confidence and maybe a bit of arrogance.  Humility, remember why I started this.  Humility.

That ties into part two of the title, humor.  Just recently an extremely close member of my family has been hospitalized going on 10 days with a very serious, potentially dangerous condition. It will be a long, but I believe a successful recovery.  It harkens me back to the days 11 plus years ago, when I lost my sister to cancer.  Right up to the very end, when it got extremely bad, she had the greatest sarcastic humor of anyone​ I’ve ever been around, even myself.  A lot of people can be put off by this type of humor, but I absolutely love it.  If you can’t make or have fun with the people closest to you, not to the point of humiliation, then you will never make it through the hard times in life.

There will always be hard times in life, whether you have an illness or not.  But if you can find humor in everyday life and even make a point seeking it out, your attitude and outlook will be so much better.  Life is so much easier with a light and humourous attitude.  Believe you me, I really go out my way to find humor or make fun of something or someone.  Not in a mean and condescending way, but just to find the joy and beauty in life.  Go out and live and laugh and enjoy the gifts you have received, even if you don’t know it.

Thank you for reading.  Please share with everyone you know and as always God bless!!

Matt

Perspective

Update on ketone-diet.  4 to 5 weeks in.  Helps with energy levels and weight loss or maintaining current weight, with exercise of course.   No effect on the OT tremor.  I will continue the diet, just because I actually like it.  I like the way it’s basic metabolic premise works.  No more updates though, because of the lack of tremor results.  There are plenty of diet/weight loss blogs you can follow.

With the recent terroristic attacks around the world, I thought it would be a good idea to add a little perspective to my life and my mission on this earth.  I still and always will believe that God has given me the mission to be the voice for the voiceless in the fight and awareness against OT.  I will be  heading to Nebraska this fall for a serious of trials, headed by the University of Nebraska.  It will be the first time that I will be able to see face to face people like me.  Hopefully I can make the connections to allow my blog, my message and the recognition on my disease to flourish.  I do appreciate all the sharing of tweets and Facebook shares that I’m getting, but quite frankly it’s not enough.

I realize that most of you have your own problems and worries in your lives.  I just choose to put mine out there in a public forum.  The only reason for this is because there are so few of us OT patients out there.  By natural personality, I have become very outspoken recently in writing and in public or personal conversations.  Oh, the things that I would like to write on this blog.  But, I don’t for two good reasons.  1.  It may hurt me and my family personally.  2.  It’s just not the right thing to do.

People and communities all around the world face devastating issues and challenges that would never compare to mine.  Terrorist attacks, famine, poverty, oppression, natural disaster.  These are the issues that should be front in center in everyone’s lives.  Sadly, even these events can not bring people to action.  I get it, people have their families to worry about, their finances to worry about, their own lives to worry about.  I have my family of six to worry about also, but if you are not active in this world, the plain honest truth is that you are part of the problem and just taking up space.

We were put on this Earth by our creator to live, love and help each other.  If you are involved in helping people around the world, around your community, or just the person in front of you in the checkout line, you are truly doing what I believe is all of our purpose in this world.  Just remember even if you live to be 100, you are still merely a blip on the radar screen in the grand scheme of things.  But, if people remember how many people you helped, then your legacy is secured.  Not only by your family and friends, but maybe by your community or perhaps the whole world.  Jesus said that the greatest of all of the commandments was to love the Lord with all your heart.  But the second greatest was to love your neighbor as yourself.  With all the uncertainty around the world, how much better would we be by just following those to simple morals of life?

Please share my messages, give me feedback, love yourself and your neighbor, because you both deserve it.  Have an impactful week and as always God bless!!

Matt