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

New Day or New me?

It’s been about 4 months since I have written anything substantial on this blog.  That was one of many mistakes.  I am seriously depressed and filled anxiety.  My body hurts everywhere.  I’ve had thoughts of just fleeing by myself.  My demented mind told me that I would never be normal again.

It was only through my relationship with Jesus Christ as my savior, that I was able to break through most of this negative thinking.  Now depression and anxiety are real, and not just for the sick of body or the poor.  I would be willing to bet that high-ranking people in government, business and even religious leaders have or have had moments like this.

As an aside: I did not miss a day of work, nor did my productivity decrease.  I say this for legal purposes only.

I plan on speaking more like this as my battle with OT continues.  Life is too short to worry about being politically correct.  I am a follower or Christ and he will guide my guide my thoughts and my fingers as I write these blogs.

That’s all for now. God bless all who read this!!

Matt

 

 

 

 

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