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

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