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

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