Battling ALS with four specialists and the Gadget Lady

Another lengthy session at the ALS center this week, or as I like to call it "The Little Shop of Horrors."

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CHARLOTTE, NC, February 26, 2017 – Another lengthy session at the ALS center this week, or as I like to call it “The Little Shop of Horrors.” Truth told, that’s not a fair assessment because every specialist I saw is a dedicated professional who is determined to care for their patients with top notch services until this dread disease can be eradicated.

The appointment was scheduled for 9 am with a one hour session allotted to meet five specialists.

Much of the first hour was spent repeating tests I had done previously such as exhaling until I practically faint and inhaling until my chest caves in. There was also the six minute walk which resembles an ALS marathon where I walk down the hall as quickly as possible without stumbling in a six-minute time frame.

Two orange cones determine the distance.



Battling ALS and learning about the wonderful world of gadgets


Following that, it was time to meet the physical therapist who also repeated several exercises from the previous visit. Most of the therapy session involved range of motion skills and balancing tests to determine whether I could pass a breathalyzer exam after drinking nothing more than a Diet Coke.

One of the exercises involved standing up and sitting down as rapidly as possible.

“I’ll say ‘stand up’ and you get up as quickly as you can. Then I will say ‘sit down’ and you sit as fast as possible.”

“Stand up,” shouted Scott, the therapist.

“Sit down.”

“Stand up.”

“Sit down.”

“Stand. Sit.”

On the third attempt I finally sat looking at him and said, “Fight, fight, fight!”


Battling ALS with friends, love and blessings


The shortest session was with a social worker who explained how her involvement would fit into the program down the road. Following that meeting, we had time for lunch, which was not part of the earlier appointment and was greatly appreciated.

In the afternoon we met with the “gift lady” who basically wanted to get a general health history in order to track the progression of my ALS. It was probably the longest meeting of the day, but it was not as detailed as the others because it involved a general overview of the wellness in my life.

Until the ALS came along it had been pretty uneventful except for a broken ankle and a few stitches here and there.

I call her the “gift lady” because she provided a number of pamphlets before we left, some other reading material and a nice satchel in which to carry everything, sort of like a “Welcome to ALS” bag.

Finally, the day ended with Amber the Gadget Woman. I have written that I thought golfers were the only group with more gadgets than ALS patients but I was wrong. Amber has a contraption for every malfunctioning body part you can think of.

The office looks like the storeroom from a Vincent Price movie.

Among the collection of tools I picked up in the session was a long multi-purpose stick designed to help put your shirt on, pull your trousers up, open drawers and any other thing you can dream up for a hook, including a back scratcher.


Battling ALS and the ‘Last of the Mohicans’


Next, I was introduced to a four by four piece of flat plywood with a good sized metal brace screwed to one corner. It appeared cumbersome but I quickly learned that the patient puts the flat piece of board between his mattress and box springs on the bed with the brace at one side near his head.

In the middle of the night when you need to get up, or when you awaken in the morning, just grab the brace and pop out of bed. No more rocking and rolling back and forth to gather enough momentum to get up.

One of the neatest things Amber demonstrated was how to bend a spoon like a letter “S” in order to get food to my mouth easier without spilling it.

But the greatest gadget was the “Pick Up Stick.” As time has progressed I am constantly dropping things like pills or pencils etc. Any senior citizen will tell you that as you get older the floors get lower by about two inches. It is no longer possible to reach down and pick up something you have dropped without considerable effort.


Battling ALS at the “Monster’s Ball”


Not with the “Pick Up Stick.” Now I have a lightweight stick with a trigger at one end that operates a claw at the other. Remember those machines at the fair or the beach arcade where you tried to pick up a prize and guide it over to the chute where you could win it?

That’s what the stick does only it really does pick things up. Only one problem. You need two, just in case you drop one.

Amber has books as thick as the old Sears Roebuck catalogues with every possible contraption known to man. My final acquisition was a large “S” shaped comb which I can now use to reach the back of my head while combing my hair. The comb has huge teeth and is extra long which means I can probably comb my hair from the next county or just strap it to my head next time I’m down in the “hood.”

From what I can gather, these sessions occur about every three months. Indeed they are long, but they are definitely thorough, and I cannot wait to find out what Amber has in store for my next visit.

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 Bob’s journeys with ALS and his journeys around the world

Editors Note:  Support Bob’s GoFundMe to give him a hand up

Follow Bob on Twitter @MrPeabod

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