Rejoice

Life is such a wonderful gift and most of us are so wrapped up in trivial matters, we forget to live.  When was the last time you took a walk with a loved one or dear friend?  How long since you hugged someone just because?  I could go on but you get the idea.

Carpe Diem should become a goal.

Rejoice in the simple, for therein dwells life!

More Ladies continued...

Sorry for the lack of postings. It takes quite awhile to type, one letter at a time, with a mouse and virtual keyboard.

This last installment of ‘Ladies’ is dedicated to my dream team: my lovely wife and daughters.

Their ceaseless harassment has engendered a continuos state of fun and light-heartedness that keeps us all upbeat and positive.  I am truly blessed.

More Ladies continued...

We have been very fortunate finding caregivers whose personalities are compatible.

Shirese has stepped into the fray like a long-time friend. Shirese is a single mom and her eight-year-old daughter is a positive fireball.

Shirese also has some unique experience that keeps me on my best behavior: she was an LAPD Police Officer for five years. I keep wondering about handcuffs...

The Ladies continued...

Since February we’ve had help on the weekends from a real character.  Henda is a wonderful addition to the support team.  Immigrating from France about 12 years ago, she has become a Naturalized Citizen.  Henda has a great wit and pulls no punches making sure I get my full ration every weekend.

You might be wondering why weekend support is needed since my lovely bride is available.  My current position on the ALS Adventure Road Map (not available at your local book seller) is the ‘road less traveled’ location, which I think is somewhere between Rock and Hardspot, Arizona.  This vacation venue requires guests to be totally dependent on others for even the simplest events like scratching your ear (caregivers can earn point for style). Guests must also be unable to breathe on their own (points given for coolest decals on the ventilator).

Weekend support allows the Little General to take care of resupply trips, etc. without worrying about my safety; it is all about me after all. ☺

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.