Travelling with ALS

TRAVELLING WITH ALS

These pictures were taken since diagnosis. The first trip I took was to Paris then London - both were on the bucket list. I've also travelled to the Northwest Territories, Vancouver, Cuba twice, California, New Orleans and about 30 U.S. States. The idea of 'do it while you can' is gut-wrenching but it makes sense so I JUST DID IT. What I learned from the trips:

The trips served as a distraction - even though the disease would eventually progress I clung to the hope that an alternative treatment would work or a cure could be found. During trips I was able to stare at the reality of the disease for only so long then focus on sites.

I went to many 12-step meetings to connect with others and shared my experience and offered hope. After meetings I was alone although not lonely - the promise of "We will intuitively know how to handle situations which use to baffle us" brought clarity and insight into living with ALS, and far from a desire to control others I was in control of myself that I desperately needed.

While driving I realized where the one of the main sources of anger came from: I got robbed! Almost every other 42-year old is able to be active with a normal life expectancy and accepting that reality sometimes seems impossible. Speaking of grieving, the disease moves too quickly to fully grieve and stressful life events only intensify the grief. For example, after using my smartphone for texting and emails last fall for two months, I used my desktop and realized my hands were too weak to type properly and was intensely frustrating...it's like (figuratively) throwing up my arms and saying "WTF?...where did THAT come from??“ And power and control matters a lot, it really does - Stephen Hawking couldnt move a muscle although every time he wrote something the whole world listens.

Yellowstone

The last road trip I took was this past February to see the eastern side of the U.S. including Charleston and Savannah. In South Carolina, I went into a dollar store (be careful with those stores - $1 is a lot for a can of pop...oops...soda) I fell in the bathroom and crawled out and started to panic as I couldn't get back up. I was lucky to have a customer in the store who was a body builder and carried me to my car then asked, 'Are you OK to drive?' I realized that my days of solo road trips were over and drove straight home without getting out of the car or stopping for food - it hit me it could get much worse if I continued.

While reflecting, I'm glad I took the driving as far as it could possibly go and see sites I've always wanted to visit.

Here are a few favorite (...can you tell I've been to the States a lot?) pictures from those trips, in the order visited:

Paris - July, 2015

Paris

Eiffel Tower View

The Louvre

Trafalgar Square, London - July, 2015

London

Cuba - October, 2015 & March, 2016

California - November, 2015

California

Gauman's Chinese Theater, Los Angeles.This was shot in December 2015 and at that time I was able to walk and hold a camera, and is reflected in the left-bottom corner of the screen.