Slippery when wet

https://www.gofundme.com/research-for-orthostatic-tremor

There are a lot of road signs in the US that warn drivers about potential hazards they may encounter when weather conditions change.  Another popular one other than slippery when wet this time of year is, bridge freezes before road.

As winter finally showed up this week, I was thinking a lot about that “slippery when wet sign”.  I don’t think I really thought about it much until the last few weeks, but my anxiety level increases when it rains extremely hard or when it snows.  The part that I didn’t realize until recently was that it had nothing to do about driving.  It was getting in or out of a vehicle and walking to or from place to place.

A few days ago, I was driving to physical therapy early in the morning and the weather was horrendous.  The roads were covered with snow, my 4 wheel drive did a small fish tail a few times.  Some of the other drivers looked like they had never seen snow on the road before, even though in Western Pennsylvania we only have two seasons, rain or snow. But through all of that I wasn’t nervous at all until I had to get out of that vehicle, and walk into therapy.

In all my life I can never remember a time when I was so afraid that I may slip and fall.  I had a below average therapy day, and rough day with my anxiety and tremor the rest of the day, because of that fear of a slip and fall possibility.  Now, I really didn’t have much trouble throughout the day, but that fear was always in the back of my head.

You see, the biggest issue that comes along with the symptoms of OT is the fear of falling.  In truth, I have never gotten nervous to the point of butterflies in my stomach about getting in or out of a car, and walking across a parking lot until that day.

I can only imagine and sympathize with my brothers and sisters whom are far more advanced in their symptoms, that have this feeling all the time rain or shine.  Fear is a powerful force, and I never realized it to that extent with my disease state until that day.

I hope you all have a fantastic and safe weekend.  Keep on reading, sharing and commenting on these posts. Thank you and as always God Bless!!

Matt

https://www.gofundme.com/research-for-orthostatic-tremor

The Lucky Ones

https://www.gofundme.com/research-for-orthostatic-tremor

First of all I would like to thank everyone for the donations for research, sharing the link, and sharing the message of Orthostatic Tremor (OT).  To date $1,875 has been donated to the fund for this crippling disease.  I couldn’t be more proud.  If you haven’t donated, I will have the link at the top and bottom of this blog.  No amount is to small, every single dollar is important and 100% goes to the research fund.  This is not money going to myself.  Thank you.

Now on to the lucky ones. What could I possibly mean by that?  Today’s Mass at church was dedicated for my sister Stephanie whom as of January 8th of this month has joined her Lord and Savior, 12 years ago.  I have friend who recently lost his beloved father to cancer just this past week.  Everyone of us has a loved one or more who has lost someone to a terribly awful disease, illness or accident.  Sometimes you’re only given a year, month, day, or no time at all to prepare for this loss.  It doesn’t matter if you’re rich, poor, famous, or an every day Joe.  It’s completely unfair, cruel and makes no earthly sense.

So what about the lucky ones?  I consider myself to be one of the lucky ones.  Why?  Yes, I have a debilitating disease.  I could hardly stop shaking during Mass from the tremors.  But with accommodation, I can live a long life, even if the symptoms get really bad.  I learned that from some of my good friends I met in Omaha.  I have tremors.  I have poor balance and run into fifty things a day.  I can’t stand in one spot for more than 30 seconds without shaking the floor, and that’s on a good day.

But, I do not have a tumor eating away a some part of my body.  I’m not in constant excruciating pain all day long.  I also God willing, have not been personally involved in a horrific accident.  My nephew Alex, whom I have talked about previously was lost to us in a tragic hunting accident 3 years ago.  But again me personally, have not suffered in this way.  This is about as positive that I can be in regards to my own situation.

Yes, OT has been a life changing event for me and my family, but I still consider my self lucky.  To this point, I’m not completely debilitated, my mind is strong and on most days you wouldn’t know I had a rare disease unless you were standing right next to me.

So yes OT sucks for lack of a better word, but my world, my OT brothers and sisters world could certainly be a lot worse.  Just one thing to hang our hats on.  Positive attitude and one day at a time!!

Thank you for reading, sharing and commenting on these blogs.  I welcome thoughts and criticism, but most of all I appreciate the support.

Have a fantastic week, and as always God Bless!!

Matt

https://www.gofundme.com/research-for-orthostatic-tremor

Faith

gofundme.com/research-for-orthostatic-tremor

Faith is a huge concept that I won’t nearly be able to cover in a blog post.  There are so many concepts that people can relate to the word faith.

First of all, there is faith in God.  Now not being an expert, but a believer in Jesus Christ a my savior, I have faith in God.  If you are Muslim, Jewish, Buddhist, Agnostic, or so-called Atheist, you have faith in what you believe.  It is my burden to explain to you why Jesus Christ is Lord and God, but that’s not what this blog is about.  Faith in a higher power or not.

Second, when it comes to OT, I and many have faith that doctors and researchers will eventually find a causation and cure or something that makes it more bearable.  That is why I am trying to raise money for them to do their work.  Right now I’m attempting to do this with a GoFundMe campaign at: gofundme.com/research-for-orthostatic-tremor.  I have faith that people other the generous ones that already have, will donate $10,20,50,100 or more to help. Faith in mankind.

Lastly, I have faith that this my calling in life.  No not be an advocate for Orthostatic Tremor, but to help people in any way I can.  I believe that’s why a became a Pharmacist and why I will have a new chapter in my life.  Am I scared?  Do I worry about support for my family mentally and financially?  Do I worry about my body holding up and my mind staying as strong as it is?  Hell yes.   But, I have faith that things will work out, because I have a great family, tremendous friends, and an obnoxious desire to win at everything!!  You may not see it outwardly, but trust me it’s there.

Faith.  A five letter word with tremendous power and strength.  I have faith in many things, how bout you?

Thank you for reading, commenting and of course SHARING this message.  As always God Bless!!

Matt

gofundme.com/research-for-orthostatic-tremor

Refresher on Orthostatic Tremor (OT)

https://www.gofundme.com/research-for-orthostatic-tremor

Since it’s a new year and many may have forgotten or have more questions about what OT actually is, I’ve decided to give a brief refresher.

1.  OT is an extremely rare Neurological disease.  How rare?  Approximately 1 to 5 people per million have been diagnosed.  So, if we go with 5, that means at most only 1,800 out of 360 million Americans may have OT.  So if you’re playing the Mega Millions or Power Ball, your chances are roughly the same.

2.  What are the symptoms or what does it look like.  OT is a weight-bearing tremor, that shows when a person stands or leans or puts any type of pressure on a particular part of the body.  The tremor in most cases stops when we sit down and lessens while walking.  It usually takes between 5 to 30 seconds for the tremor to start upon standing.  However long we stand determines the severity of the tremor and it will radiate throughout the entire body.

3.  How is it treated? Too put it frankly, it’s not.  None of the medications are very effective in stopping or lessening the tremor.  I have found that physical therapy has helped me with my core and leg strength, enabling me to withstand the tremor longer before needing to sit. This may not be the case for everyone.  OT is very exhausting and if you’re not in good shape or are inflicted with other medical conditions can be damn near devastating.

4.  So what’s the good news?  OT is a relatively slow progressing disease. Most people do not get walker or wheelchair bound until many years with the disease.  If you are lucky enough to have a career in which you sit, you can work productively for a long time.  I have met many wonderful people senior to my age that are not only wonderful to be around, but are very intelligent and are hidden gems to society.

The bottom line is that there is no cure, no viable treatment and no known cause of the disease.  Money for more research and study and trial and error are needed desperately.  That is why I have started and ending this post with a link to a GoFundMe campaign for research money.

Most importantly is that we the people with OT must stay positive, active and maintain a sense of humor with the disease.  So if anyone reading this message hits that Power ball tonight, I expect a very large donation in the near future!!!

More personal experiences to come in future blogs.  Thank you for reading, commenting and most importantly Sharing these posts. Have a wonderful bone chilling week if you are on the US east coast, and as always God bless!!!

Matt

 

https://www.gofundme.com/research-for-orthostatic-tremor

New Year, Big Visions

Welcome 2018!!!

This being my first blog of the year after finishing my first full year with Orthostatic Tremor, I wanted to welcome all of my faithful and new followers.  I want this entry to be short and sweet, by briefly stated my intended goals for this blog.

First of all I am planning to write more.  Many people have told me either in person, via text or Facebook IM that my words can be inspiring to them, so I would like to try to write more often.  I also do not want my message to become stale.  So more quality blogs hopefully.

Secondly, I am planning to do whatever I can, however I can to raise money for research for this brutal disease.  This money is not for me!!!  I can’t stress that enough.  You may have already received a gofundme message on Facebook or Twitter.  This is my first attempt, because even though it’s New Year’s Day, the holidays are more or less over, and secondly it’s colder than you know what out there.  So an internet fundraiser seemed to fit perfectly.

Lastly, I plan to be inspiring and more spiritual every single day that I have left on this earth, which matter of fact, my Neurologist says will be about 59 more years.  I told him I’m holding him to that, or I will haunt him forever.  We are about the same age so, hopefully he’s planning living to 100 also!!!’t

That’s it.  Sounds simple right?  We’ll see once life gets in the way.  I believe that my calling is helping others and right now this is the best way I know how.  Like Jimmy V said “don’t give up, don’t ever give up”.  My attitude was reinforced by a really good friend this weekend, that 2018 was going to be a great year for me.  Better for all of us I hope.  No better time to start than at the beginning!!!

Thank you for reading, commenting, and most of all sharing these posts.  Your support is defiantly felt on this end.

Thank you and as always God bless!!!!

Matt

Here today, gone tomorrow

There are over 7.6 billion people on this planet.  Can you even wrap your head around that?  Can you imagine the thoughts, feelings, pain, suffering, joy and elation that each of these individuals go through on any given day?  Whether they are 1 or 100, healthy or terminally ill, poor or obscenely rich, it’s hard to imagine.  It’s hard not to feel insignificant when you think of life that way.

But, that’s not what your’s or my life is remotely about.  You may have a large extended family and friends, or just a few people who you are very close to.  That is your world, that is my world.  It’s hard not to get depressed or discouraged when illness, death, betrayal, or the mundane routine of everyday life occur.  People, myself take way to much for granted every day.  Horrible and amazing things happen everyday and the world just keeps spinning.  Take a minute and think of all the things that have happened in your life the past 12 months.  Pretty daunting isn’t it?

It seems like people in general only think about these kinds of things around this time of year.  We think about all the things we are going to change next year in our lives.  The more time we are going spend with family.  The more generous we are going to be with our time and money.  The wrongs we will try to right.  Is it all talk aimed at trying make ourselves feel better about what we did or didn’t achieve?  Is it just part of that same everyday, or in this case every year occurrences of our life?

As a person with a chronic illness, this kind of thinking can really drag you down.  You start to think that none of the 7.6 billion in the world give a damn about you or anybody else for that matter.  Most days I consider myself lucky that my illness is not immediately life altering or threatening, but I admit to having very selfish days in which I want to cry out, “what about me?  Doesn’t anyone care about my daily struggles?”.  It’s enough to make you go mad in the head and forget about perspective in life.  No, those 7.6 billion people could care less about you or I.  But, if your lucky enough to have one person or a whole network of people in your corner, that’s all you need.  “Life sucks, then you die.”  No, life is and always will be what you make of it.  I hope you and I choose not blame others or God for our lot in life, but remember those few people who love, care and need you.

Thank you for reading and sharing.  May God bless you and keep you.

Matt

Matthew 2.0

Hello all.  I know I haven’t written in a while and no this title does not refer to any Bible verse.  Everyone has ups and downs in life.  Some last for a few days, while for others it can last for years.  I have gone through some troubling times as of late, but just like a new iPhone comes out every year with improvements and new features, I myself am going through a similar process.

I have not forgotten my OT community.  I just want to make sure my best version is available and able to put into words.  I will continue to strive for the positive and to be that voice for OT.

Thank you for being with me, with prayers and encouragement.  Happy Thanksgiving, and as always, God bless.

Matt

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