The Ladies

One of the perquisites of having ALS, and having had the presence of mind to purchase long term care insurance, is the opportunity to meet some very special Ladies: my Caregivers. These Angels are indispensable in making the day-to-day mundane of ablutions, dressing, and culinary needs not so daunting.

Because these gems take such great care of me, I have been accused of ‘living like a King’ and that sentiment may not be far from the truth ( horror-stories about caregivers abound ).

Tomi (pronounced ‘toe-mee’) was with us for a year before returning to nursing school this last September.  Originally from Nigeria, she immigrated here 11 years ago at age 12.  When I started this blog, Tomi was kind enough to type for me. She is also quite talented; check out

http://www.reverbnation.com/main/overview_artist?feature=landingpage#/nextomi

Tomi is quite the young lady.

What if you knew...

...that in your 40‘s, 50‘s or 60‘s you were going to be the proud recipient of the shit end of the stick:  a seriously debilitating and/or terminal disease.  Would you make any changes?  It’s a good thing we’re not prescient.

We’ve all had a chuckle about the guy or gal who dodged some bullet and we remarked “boy are they on borrowed time”. Being diagnosed with ALS changes that to “boy are they on finite time”. The light at the end of the tunnel is truly a freight train; you just don’t know how fast it’s going.

We’ve all laughed about the saying, “life: no one gets out alive” and certainly this is a true statement. And most of us, if we’re lucky, just get lights out after a long and rewarding journey.  For me, ALS has provided the opportunity (yep, I really mean that) to get all the important things in order. It is imperative for your peace of mind to get all your ducks in a row:  Get the will set up. Get the powers of attorney in place. If need be, get the trust properly set up because the freight train is coming.

Make a bucket list and get crackin’!  Take control of those things that you can to ensure  maximum quality of life. Nobody’s ever put on their tombstone, ‟Gee, I wish I could have worked more.‟  I don’t want this to seem negative; quite the contrary; it is critical to be completely realistic: the clock is tick tick ticking.

Learning to drive

I remember well my father teaching me to drive in the old green 56’ Ford. When it came time to teach my daughters to drive a stick, I was often transported back to those times with my dad. Once again I am teaching people to drive. But this time, it’s an electric wheelchair.

As your muscles fade, you find that you must relinquish the chair-driving to someone else if you want to go anywhere. If your caregiver has experience, then it’s no big deal. But if it’s a family member or caregiver with no experience, you better strap in, hang on, and get ready for a ride. 

I encourage you to give them ample opportunity to practice in a big flat paved area. Learning on the sidewalk is not recommended: there seems to be some innate attraction between the wheelchair and the curb. I’m not sure if the wheelchair manufacturer programs this into the software or if it’s the result of a careless word spoken at the most inopportune time. Either way, you don’t want to go off the curb…very bad juju. Remember to just smile brightly, suck it up, be patient and say thank you.