Battling ALS with friends, love and blessings

One day we are young, excited, having fun with the world, and a long life ahead of us. Then that changes - drastically and quickly. And that brings with it a mix of very good and very bad.

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Top image: Promotional image by Photos Roger Ferrero at Norweigian.com Bottom image: Image courtesy of http://goo.gl/A8ykMA using a Creative Commons licence.

CHARLOTTE, NC, February 12, 2017 – According to most doctors, in the world of medicine, ALS is undefeated. That does not bode well for those of us who have been diagnosed with the disease.

On the other hand, receiving such dire news is not entirely a negative thing. Other than the slow erosion of your motor skills, there are numerous reasons why early detection can be, in many ways, regarded as a blessing.

At some point in every person’s life, there comes a time when we become aware of our own mortality. In our early 20s and 30s we may feel invincible, but somewhere after that, most of us realize that the end of the line will eventually occur.


Battling ALS : A battery of tests and paperwork



In the case of ALS however, especially when there is time to read up, learn and study the disease, those precious remaining months and days can be utilized to maximum advantage.

Though I became aware something was not quite right in April of 2016, I did not learn the extent of my illness until late August. Knowing full well that I was now truly living out the winter of my life, there was, in an odd way, a sense of relief that the curtain will one day fall onto the stage that has been my life, and in that knowledge, I am now able to prepare for the final scene.

Over the past few months, we have been immersed in paperwork: powers of attorney, refinancing the house, updating wills and the like. It hasn’t been easy, and certainly not fun, but now that the last few signatures remain, there is a calmness and serenity that everything is in order. That is a blessing.

That is a blessing.

At one time or another, we have all been to a funeral. It often strikes me as I mix and mingle with people I haven’t seen in years, that the individual who should be present is always the one who isn’t.


Battling ALS and the ‘Last of the Mohicans’


With ALS, there is a feeling not unlike going to the movies and watching the previews of your life. Since August we have had neighbors cut our grass, bring us food, send cards, call us, drive, sow our lawn, cut my hair and I have heard from former classmates and friends I have been out of touch with for decades.

Chalk it up to social media, modern technology or whatever other modern connecting device you can think of, the countless visits, good wishes, offers of help, financial assistance and just plain old caring have enriched my final days as nothing before.

Each day brings with it new challenges. In a way it is a bit like watching the tide go out and wondering what changes will be next.

In order to close the car door, for example, I now swing my left arm into a circular motion until my fingertips can latch onto the handle.

Reaching for things overhead has become what I call “the itsy-bitsy spider” exercise. I place my fingertips on a wall or a flat surface and use my fingers to climb upward until I can get my hand in a position to grab whatever I need. I’ve had more than my share of dropped cups, plates and food, but the spider keeps on climbing whenever he can.

I am saving money on shaving since it has become a once every third day task. On any given day, it comes down to a choice of whether I want to look like Gabby Hayes or turn myself into a self-sacrifice.


Battling ALS and reuniting with APBPA, a true “band of brothers”


But these are merely details that must be worked out and overcome.

Someone once told me never, ever leave someone you love without letting them know that you “love” them. ALS has driven that message home to me in so many ways. There has been time, in various ways, to make amends with people I may have hurt at sometime in the past. Not always people I encounter on a daily basis but friends and acquaintances with whom I can atone for whatever indiscretion.

We have all heard stories about your senses becoming more keen when you know the end is near. I cannot say that colors are any brighter today than they were yesterday, but I can report that a 70-degree day in February means a lot more than it might have before.

I appreciate the chirps and tweets of an avian symphony early in the morning and late in the day when the birds sing their sweet melodies. Raindrops on the roof do, indeed, sound more soothing than ever before.

The list grows with each new memory. Time is more relevant. Travel has become an even greater passion for I am all too aware that there is still much to see and to experience.


Battling ALS at the “Monster’s Ball”


Then again, if it all ended today, I would know that my life was richer for all the things I was fortunate enough to do and from the knowledge that those who said they cared…really did.

Contact Bob at Google+

Bob Taylor has been traveling the world for more than 30 years as a writer and award winning television producer focusing on international events, people and cultures around the globe.

Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)

Read more of What in the World and Bob Taylor at Communities Digital News

Follow Bob on Twitter @MrPeabod

Read: After ALS diagnosis, Social Security says pound sand then help support Bob’s fight against ALS at GoFundMe.com

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