inspiring...

Yesterday a good friend and I were chatting. About me getting a trike.

And then I began dreaming. And haven't stopped.

www.rideataxia.blogspot.com

I am sure that is what Kyle did.

Thanks, Kyle for fighting for a cure for FA.

And riding a cool trike, too.

Maybe someday we can meet halfway...

the wait and see game.

As each day passes, I am so keenly aware of how my life seems to be all about the wait. And then I'll see.

The wait and see.

You think I'd be a pro at this game. But a game is usually fun. Unless you're like my dad and despise board games. At times, FA can be fun. Almost feels like a game. And although I don't consider myself a competitive person, I want to win this game.

You're going down FA!

I want to play this card. The symposium of FA.
http://www.curefa.org/EnergyBall/
Thursday, August 26
USF
Tampa, FL.

I desire to sit amongst the smart people who are "rolling the dice" as they find a cure for FA. I hope to thank the people who own Park Place and Boardwalk as they sacrifice fiscally for the advancement in research of FA. I am willing to risk the humidity and travel for the sake of getting the "out of jail" card.

Because at times, FA makes me feel like a prisoner in my own body.

So I wait and see...

and pray and HOPE.

questions...

I'm still able to walk. It's been two months off of Chantix. And thanks to my photographer friend, Becky, she was able to capture this "miracle" through her lens. Truth be known, I didn't know how it would go. The whole walking thing. The photo shoot was a blast. (www.beetreephotography.blogspot.com)
"Becky, don't freak if I fall. I'm use to it."
I didn't! I'm sure Becky was relieved, as was I...and quite happy.
The fact that I am still able to walk with Delsie causes me to ask some questions? Which admittedly, leads to worry and before long I am taking a ride on the slippery slope. I was awake at three in the morning with tears dripping down my cheeks. And eventually sweat seeping out of my pores...at three in the morning.
Did something switch over in my brain during the study? Did the Chantix re-wire things? Will it last? Will it get better? Will it get worse? Is this it? My life- this- is this it? FA. Will they find a cure? Am I doing enough?
Panic starts to set in. So I attempt to take a deep breath and realize this is nothing I can control. I must embrace the journey. Seek the hope. There is always hope in the journey. And these photos remind me of that.
Thanks, Becky. For that gift. I am drinking it in...and hoping for a full night of sleep tonight.
I have been on the supplement for two weeks. I am feeling like talking is easier again. I am not thinking about forming my words. And just maybe the vitamin is protecting my heart, too.
But the supplement is not the only thing that is protecting me with this FA...God totally has my back. Every. Single. Day. 3 AM or 3 PM.

who's keeping score?

I was in a busy mall with one of my brother-in-laws the other day. It is not often that we hang out. It was eye opening to him.
"I totally feel famous walking with you, Holly."
"Believe me, Robert, they are staring at Delsie not me."

I am okay with this. The stares and comments are not directed at me. Delsie is beautiful. She's intriguing. And certainly something to be in awe of. She takes the pressure off of me emotionally and physically. We have been a team now for nine years. I have been in a wheelchair four of those nine years. I know the questions and comments and can even predict the passer-by who is going to gawk. It is typical for kids to stop and watch and say, "COOL, DOG!"

That is, until this morning. A boy about 9 yrs old was getting off the elevator as I was waiting to get on. Once he stepped out into the hallway and I moved forward, I could feel him staring. "Here we go," I thought, preparing for the typical questions. As Delsie and I turned to push the button of the floor we needed, the boy was stopped and staring wide-eyed at us. I tried to brake his stare with a "Hi." His stare broke as we made eye-contact. His eyes were wide and his mouth hung open as he exclaimed,"COOL, WHEELCHAIR!!"

This observation warmed my heart and made me laugh. The elevator door shut and I looked down to see if Delsie felt jilted this time. I think she's okay with it.

The score remains: Delsie: 7,678 Wheelchair: 1

the "laugh" wall.

I'm dying. I know, we all are, sooner or later but today, I am feeling the urgency of the "sooner." That's the part of Friedreich's Ataxia that I don't think about. Or simply put, I don't allow myself to think about. But the reality is, this diagnosis is suppose to shorten my life. Research states that my heart may give out or I'll develop diabetes that will eventually wear me out. The studies of FA have shown that my vision and my hearing will deteriorate. I'm dying. Plain and simple. And I feel the urgency of this dumb disease that has progressed thus far in my life. I have FA and I'm dying.
Perhaps this thought process was triggered by the Hearst parked in the parking lot of my place of employment this morning. The back end was open and curiosity got the best of me. I quickly perused the parking lot to see if anyone would notice me making my way to sneak a better peak. It was empty. But my mind immediately transported me to thoughts of my own coffin being hoisted into the open "station wagon." I think it was all down hill from there. By the time I reached my office and turned on the computer, my funeral was planned and I envisioned the songs that would be sung and friends who would attend. Morbid, I know. But true.
Reality is I have FA and I'm dying.
It has been studied and approved that a specific supplement would be highly effective in treating the symptoms that come with FA. I have known this for several months but was instructed not to take it until the study with Chantix was over. I have left no stone unturned as I made attempts to find the cheapest way to afford this supplement. A med that will not only protect my heart but has proved to improve speech and coordination of those with FA. FA that is killing me.
My efforts feel in vain as the urgency of this disease seeped into every fiber of my being today. I bit the bullet and ordered 6 bottles of this supplement that will only last me 6 weeks for $200. As I clicked the mouse to submit the order for a vitamin that may help me talk better or aid my ticker to tick, I realized how irritating FA really is. I didn't have the option to buy designer jeans with that money. A choice that has been taken from me yet again.
I have no control over FA. But what I can control is what I am going to do to fight against the death grip it may have on me and so many others with this diagnosis. It's not going to suffocate me. I won't let it. I know it's big. So much bigger than me but so is God. FA is nothing to Him. I have to believe that. It helps the urgency of days like today. Knowing full well that I am dying.
We all are.
FA or not.
Last night, a friend helped me finish hanging photos on my "laugh" wall. As I type this, the faces of friends and family are reminding me it's going to be okay. Death is a reality and a treatment or cure for FA will soon be one, too. And I'll spend time making a point to laugh along the way.
Enjoying my life in death.

Another...

Another clinical study. Another whirlwind experience. Thursday, my friend and I embarked on a road trip to Ohio State University in Columbus, Ohio. A six hour trip that turned into eleven hours as the Goodwills on the way screamed our names.
I knew what was going to be involved in the test. I was uncertain how I would react. Simply said, I am glad that I have a year to forget about it. OSU was impressive and those involved on this particular study were great. This is a clinical study that examine the heart of those effected with Freidriech's Ataxia. And that would be me. Ignorance is sometimes bliss. And that statement applies in this situation.
A team of researchers/nurses/doctors and technicians "worked" on me for 3 hours. I began the test by adorning the infamous hospital gown, performed the studies neurological tests, met the cardiologists and poked for two IV's that came out of the same arm. I was wheeled back to the MRI room and another team introduced themselves and quickly became captivated with Delsie.
After I was completely strapped down on a narrow stretcher, I panicked as my nose started to itch. The table slowly moved me in a tube up to my ankles. If I just lifted my head from the table, my nose problem would be solved as it would be squished. I then panicked feeling that I had to sneeze. And then my shoulder started to itch. Another hour in this MRI- I thought I would have to squeeze the emergency ball they placed in my hand to pull me out. The contraption across my chest didn't help along with the instructions to hold my breath and then relax. RELAX?!
It was at that point that I started envisioning myself laying in an open meadow. This was a mental challenge more than anything else. A nurse came out to holler down the tube that medicine was going to flow to make my heart race. For four minutes. In a tight tube. I started to pray for my friend who is waiting for a heart transplant. This was a cinch compared to what he is going through.
I couldn't have been more relieved when I heard the nurse tell me they were done. Once again, Delsie was a trooper.
And more Goodwills on the way home.
So, this visit is done for this year. I will endure the same thing once a year for the next five years. Over that time, my heart will be studied and compared to other FA patients. And I wait. And hope. That some day there will be a cure.

Memories

Before this journey becomes a thing of the past, I scroll through the photos and remember. Or laugh. And in this video, I am doing just that. The plane is very "bumpy" because we are preparing for the flight home from FL to MI for my last visit to USF last month.
I need to remind you that this is one of my sisters who is petrified of flying in a small plane. When we were on the tarmac anticipating the take off, there was a flapping sound on the exterior of the plane that freaked her out. FREAKED OUT. She wanted me to tap the pilot and draw his attention to the noise. (that is what she is saying, "get Matt"! Followed by her pointing.) I was laughing so hard, I almost wet my pants. Her eyes and labor breathing say it all.
And watching this video, makes me laugh.
Here's to memories.
Last week was my last official phone call with USF. In the conversation, I reported that I felt like I was still doing well. I was thrilled to say that I haven't fallen since being on Chantix. Jokingly, I said that since I said that, I would fall.
And I did.
The next morning getting out of bed.
Nice.
My focus now is getting on a supplement that will protect my heart.
And I continue to be hopeful that this fight to find a cure for FA is not over.
There is always hope.
Even with a flapping noise on a tarmac.