Thursday, May 15, 2014

41 and counting

My 41st birthday came and went, and about the same time, my right leg just... stopped. Now, I can still move it, and I can still walk, and I can still DO things... I just can't seem to get the leg to do what I want to do, when I want to do it. The brain misfires are getting more significant.

I have lofty goals for this year. I want to play football next year. I want to ride my bicycle all summer. I want to be out and about and as active as I can be. I'm not ready to give in yet to this disease.

Two weeks ago I went on a new medicine -- the last hope before levodopa --dopamine.

And it didn't work.

In two weeks, I'll be seeing the doctor -- and starting dopamine.

I'm terrified... having had a hard time processing all the realizations at once.  The realization that I will never own a motorcycle again, that I just sold my car and may never be the sole owner of a car again. And that I need a cane. Sooner rather than later.

Tomorrow night, I do another sleep study -- to confirm that I do in fact have REM sleep behavior disorder (sleep specialist says it's only seen in men, first I'd heard that, and of course, I have it... so, no, it's not)... and to prove yet again to them that not every fat person has sleep apnea.

And I suppose I should do the sleep study since the last one never got me into REM sleep... and well, it's 3:22am.... and I've been up almost 2 hours... for the day....

I hate Parkinson's Disease.

Saturday, February 1, 2014


Readjusting back to 'normal' life here in the states has been a challenge.

With the move, my new job, and everything else, I have not had time to even HAVE jet lag. Two weeks out (almost) and I am still fried and peeling, but look must less like a severe burn victim.

People have asked me ... will you go back? will you try again?
I don't know. Maybe? Let's see where my health is at that point?

I have so many people to thank, for making my trip to Africa amazing.

Godlisten, Goodluck, Edward, Bill, Kevin, Mandy, Mike, my safari guy's name. 


The Michael J Fox Foundation for Parkinson's Research has one heck of a marketing/branding team, I have to admit. They have a great cause to support, and the spokesperson/namesake is someone that anyone from the 80s has to have at least a little twinge in their heart for -- Alex P. Keaton with Parkinson's Disease? Unimaginable.

One thing I can say about my mother, is that she never really discouraged me from doing anything just because I was a girl (except going into the Air Force, but that was probably a good decision regardless). I will always be thankful for that.

I cannot tell you how many people have asked me why I would go to Africa by myself, why I would attempt to climb Mount Kilimanjaro by myself. Why I would pick up and move to Louisville for a contract, and now to Cleveland for a permanent job. (I plan on staying in Cleveland till I retire. Period.)

For me, it took months... close to a year now... for the reality of a Parkinson's diagnosis to set in. Sure, I would fall down, I've always been clumsy... but the tremors spook me, even now. Thankfully, if I take meds on time, they don't show up on the outside. But one thing I've learned about PD is that the shaking? You can often feel it on the inside before it makes it to the outside. And that part? really sucks. It's the freakiest, weirdest feeling you can imagine. It's not pins and needles... it feels like your muscles are shaking on the inside.

Going to Africa, prepping for Africa, climbing as much as 15 hours a day? I feel like I can do anything now. I've signed up for my gym at work, I walk to work (when I was still staying downtown), and now I walk to the rapid station and take the train to work. For anyone that knows me - these are DRASTIC lifestyle changes. I can now easily drink a gallon of water a day (oh, Kili, how you taught me that lesson). Baby steps? Yes. But if my body is going to someday give out on me, I want to be able to be in the best shape I can be, and to be as small as I can be. Nothing motivates like having the realization hit you that you are simply too large for one person to easily pick up without hurting themselves.

I have learned so much. I feel like I *know* how far my body can be pushed. Why not keep pushing it, while I still can? Who knows IF I will reach a point where I can't do whatever I want, whenever I want, but -- I am not about to slow down. 

Wednesday, January 22, 2014

Leaving....on a jet plane...

Right now, I'm somewhere over Kenya and very emotional.

When a couple of friends said I'd be leaving a part of me/my heart behind, I dont think I believed them. I do now.

I fell in love with the people in and around Mt Kilimanjaro. The joy they take in leading each and every one of us on our own personal joy, pkus the joy in their own hearts as they finished another successful climb was so beautifuk to watch.  Im so vrry glad I captured the songs on film, the dancing, the joy.

When a year ago I started showing the quiet symptoms of Parkinsons disease, I didnt say a word to anyone. Not till they had stuck around about 4 months. Then, I knew. I may be a bit of a hypochondriac,  but this wasnt in my head.

It was months before I mourned the diagnosis,  because of this trip.  I immediately got on board with this trip and I wanted nothing more than to get out and live!!! This week, I pushed my body to limits even I didnt know I could reach...and beyond.

I climbed over 15 hours two days in a row on Kilimanjaro!  I set my feet in the snows and ice that will be gone soon! I traveled 25000 miles roundtrip by myself!!

I have a new outlook on life, and new motivations to start our lives over in Cleveland next week!

29 hours to go on this plane, I still look like a swamp creature, but im ready for anything now.

The pilot flew over Kili (look up!), do here are some pics.

Addis Ababa

I love Ethiopian Airlines.  New planes, good food, lots of amenities.

What I do not like us the ADD airport!

They use a strange boarding system, planes load at the last minute and asking a question is impossible.

And theres no wifi, free or otherwise. No place to charge anything and TONS of people every where. Tonight while waiting I got to witness Muslim prayers IN the airport.

I'm such a sheltered American in so, so many ways. A lot of those ways, I didnt realize until this trip. What an amazing lufe experience!

Flight pics from my last night