“Yeah, my balance is getting better.”

I was contacted two years ago by someone inquiring about the transplant.  I gave him all the info needed to contact Dr. Burt, and didn’t hear from him anymore.

Three months ago, I was put back in contact with him.  His disease had progressed, and he was out of options.  I stayed on the phone with him for hours, doing my best to quell any fears he had about the process.

It was a strange feeling.  Putting myself back in that state of desperation and panic.  Having M.S. is already like being in a car with no brakes, but be in that car, and be headed for the Autobahn is a whole nother monster.  His disease had become very active, and non-responsive to his meds.  he had to act quickly.

I’m happy to say that he got the treatment, and is now at home on what I call the “Lockdown,” period.  When I called today to check on him, and see how he was feeling, he told me that he’s already seeing improvements.

I’m celebrating with you brother.

Don’t Make Yourself Sick

I’ve said this before, but I’m saying it again:  Manage your stress.  Stress affects us differently than other people.  It sucks, it’s not fair, etc., that doesn’t negate the fact that it makes us MORE sick.

Life is stressful, so now what?  Now, we stop letting life happen to us and we start engaging it.  I feel like MS is that much more stressful because as soon as we have an attack, the fears of “oh crap, how bad is it gonna be, what else is gonna act up, now I can’t go do _____” and on and on and on.

These concerns are natural, we’re not wrong for feeling them, but we’ve got to stop getting stuck in them.  Losing sleep, losing appetite, losing the ability to concentrate are all markers of us letting our mind attack our body that much more.

Knowing is half the battle.  Catch yourself when you get caught in a funk.  Remind yourself where you are in that moment.  Handle that situation.

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”  -Jesus (Matthew 6:34)

Remind Yourself

It’s rough, I know.  A negative outlook makes it even rougher.  Choose to remind yourself the positive things.

Model her:

Regarding Tomorrow

Tomorrow is scary.  There are so many things that can go wrong.  There are so many potential headaches and frustrations waiting for you.  You never know what you may lose.  You never know what new parameter will be placed around you.  Tomorrow is scary.

I once had a teacher who compared fear to rocks.  She asked us to think about our fears and imagine placing them into a bag.  Then she asked us, what we gain from carrying that bag around.

The main thing we still have in our power is our mind.  I challenge you not to burden it with a bag of rocks.

We Are Napoleons.

I graduated from the top graduate advertising program in the U.S.  The program is known for being so tough, the graduates wear berets instead of the traditional cap at graduation.  Signifying the Green Beret style training, and subsequent special abilities we now possess.

I know of another person with MS who is in law school now.  This will be his third degree.

Another friend of mine with MS, has their own radio show.  She has no bodily function— yet her show still goes on without a hitch.

There’s no doubt in mind that the people with MShave “Napoleon Complexes.”  I think it happens the day we are diagnosed with the disease.  Reading the literature, seeing all the things that we will eventually not be able to do, motivates us to act.

Sure, the wind is knocked out of our sails when we’re first diagnosed.  Sure there are days when we just want to sit still.  But know that soon we’ll be back at it.

God Saved Me

I had no hope.

Of course, I was trying to keep a positive attitude, but at 20 years old, I had already had four medications fail to stop the progression of my MS.

There was nothing I could do, and I felt there was no one I could talk to.  Like many others fighting this battle, I was trapped in what felt like a slow sinking ship.

I turned to my faith.  I’m thankful that I was born the son of a minister in The Church of Christ.  I had grown up with firsthand knowledge of God and his mercy.  In that moment, all I could do was talk to him.  I had always prayed and been spiritual, but once I was diagnosed, I feel like God was all I had.

I won’t tell you I had a vision, or an angel spoke to me or any fairy tale like that.  But I will say with zero hesitation that God smiled on me.

I had one regular neurologist, he prescribed me my regular medication, and authorized the steroid treatments when I needed them.  At the same time, I participated to a trial that was taking place at NIH.  After a year, the trial ended unsuccessfully, but I had built a rock-solid relationship with the researchers at NIH, that they pretty much became my primary neurologists.

Over the course of the next three years, I had two more drugs fail me.  At which point, Dr. Blelekova at NIH told me about the trial taking place at Northwestern.

And now I’m here, six years removed from any treatment.

Thank you God.  I give this COMPLETELY to you.

Hope is Coming!!

Researchers from the Universities of Cambridge and Edinburgh have identified a mechanism essential for regenerating insulating layers – known as myelin sheaths – that protect nerve fibres in the brain. In additional studies in rodents, they showed how this mechanism can be exploited to make the brain’s own stem cells better able to regenerate new myelin.

Read entire article here.