Saturday, June 24, 2017

2017 Disabled Cruising Again – Part 1

Do not adjust your computer/tablet/phone. You read that correctly. For the second time this year we are cruisin’.

In February, accompanied by my brothers and their wives, Kim and I sailed throughout the Caribbean for seven nights aboard the Celebrity Silhouette. Beginning this week, Kim and I will be sailing by ourselves (along with a few thousand other people) for ten nights on the Celebrity Summit.

We depart from Cape Liberty, New Jersey, which is just across the river from New York City. Note that our fourth stop is Portland, Maine. The terminal is walking distance from our house. I proposed to Kim that she could take advantage of that stop to go home and do a load of laundry. My suggestion was not well received. I can’t figure that woman out.

Anyway, perhaps something interesting will happen on this trip and I will blog about it. Stay tuned.

Tuesday, June 13, 2017

The Yin and Yang of MS

I am dependent but not helpless.
I am left behind, but I enjoy time alone.
I am fragile but not weak.
I am embarrassed but not ashamed.
I am disabled, but I'm not hungry, wet, cold, or abused.

I don't walk in the woods, but I still sit by the ocean.
I don't sleep well at night, so I can't stay awake during the day.
I don't travel as much, but people come to me.
I don't work, but I remain relevant.
I don't walk, run, swim, or bike, but I still breathe, swallow, see, and speak.
I don't drive, but I am driven.

I am a born optimist, but I don’t like my chances.
I am a prisoner in this body, but I possess free will.
I am embattled, but I remain content.
I am frightened, but I am loved.
I am frustrated and discouraged, but more often I am amused and intrigued.
I worry about tomorrow, but I live for today.

Tuesday, June 6, 2017

Eating: A Medical Necessity?

I’ve passed a lot of milestones in my disease progression—cane, crutches, scooter, wheelchair, disability retirement, the involvement of my upper extremities, and more. Recently, I’ve encountered another milestone—feeding myself.

A couple of years ago, Kim began helping me with certain tasks like cutting my steak. Then, with the assistance of my OT Maren and my friend Michael, we devised adapted utensils for me. Those sufficed for quite a while, but not so much anymore. For the past few months, at least half the bites of food I have consumed came from Kim’s hand, not mine.

Back in 2008, when it was time for me to graduate from scooter to wheelchair, I stumbled upon the iBOT, and because of its advanced technology, I felt better about the transition. Now that I need assistance in eating, I found some cool devices to lessen the blow as well.

Liftware Level

I bought one of these spoons, and it’s amazing. Check out the video, below, or click here.

I call it my “Harry Potter” spoon. The Liftware Level costs $200 and is not covered by insurance.

Obi

I bought one of these, and it reminds me of the iBOT. While making my life better, it serves as a conversation piece and a crowd pleaser, not simply a piece of medical equipment. It is battery-powered and mobile enough to take with me to most places where I might dine. Check out the video, below, or click here.


Obi it is expensive – $6000. I filed a medical insurance claim, and it was rejected. Apparently, being able to eat is not a medical necessity. I am filing an appeal, but I'm not sending my Obi back, no matter what.

Thanks go out to my occupational therapist, Maren, for introducing me to both products and helping me integrate them into my life.

Closing Thoughts

Losing the ability to take care of myself is frightening, but technology keeps offering solutions, and I love technology. I am aware, however, that many disabled people can’t afford these expensive devices. We need to find ways to make these adaptations available to everyone.