Skip to main content

Challenge Accepted

.Have you heard of Ice Bucket challenge? It is an activity that somebody started to promote  ALS awareness and to challenge friends and family to contribute monetary donations to help fund research to find a cure for ALS. Well, it appears to have taken off like wildfire, or should I say, gone viral, through social media thanks to Facebook and Twitter. And most recently, thanks to celebrities, sports figures and teams, musicians,.Local news teams, major networks, etc. This is such a boon to the ALS community! We need the exposure so desperately. This disease not only devastates the sufferer physically, but emotionally, and financially as well. Generally the sufferer declines so rapidly, family and friends have trouble keeping up with the changes.

Charitable contributions most often go to higher profile diseases who are also deserving, but ALS has no treatment nor cure. Only a series of unrelenting declines. ALS is considered a relatively rare disease as 30,000 people in the U.S. At any given time have the disease. However, approximately 5,000 new cases are diagnosed each year and sadly, about that many die each year.It is believed that ALS is not incurable, just underfunded. The underfunding is due to a lack of understanding of the disease. The interest generated by this exposure is invaluable not to mention the money raised which will go directly to research to battle the deadly disease.

On that note, I want to do my part and am announcing my intention to participate in the challenge. Of course, I will need help since the ability to hold and lift an ice bucket has long since left me. .Wouldn't you know, the first caregiver I asked to help me, was thrilled to also do the challenge and thought we should invite other caregivers as well as management. Next thing I knew the executive director is at my side offering to support and participate in the challenge. Woo-hoo! The date is set...

Friday, August 22, 2014

Comments

Popular posts from this blog

Lashing Out

Fed up. Sick of hearing, "I'm sorry."  Apologies don't erase the pain you inflict on me. You pull my pubic hair. Your nitrile gloves pull the hair from my head. Not once in a while but day in and day out. You turn me in a manner that suits you rather than in a manner that doesn't stress my body. Why won't you use the pad and sheet to turn me as one unit? Instead, you allow my body to twist as you hold me one-handed. How good you are at your job. What part of "my muscles are dying" don't you understand?

Shards Cling To

I just met my new psychologist and I already like her. I would say that it is effortless to talk to her, but talking to anyone through an augmentative and alternative communication (AAC) device takes a great deal of effort. One must think about what to say and drill it down concisely and succinctly, Then attempt to type it out with your eyes on a wonderous, but infuriating machine, and hope you nail the 'Speak' button, and not the 'Cancel' button. You're praying that the device doesn't spontaneously, disengage the eye gaze, leaving you mute and helpless. You're also praying that the calibration holds and your eyes don't tire or dry out. Aside from all of that, she did not overwhelm me with rapid fire questions, nor invade my personal space, by insisting on reading while I'm writing, instead of allowing me to "speak". Those things are huge. Counseling somebody with my disabilities, present unique challenges. I have major physical deficit...

Managed

Managed care, do not get me started. It is the bane of my existence and my savior. If quadriplegia has curtailed my activities, and it has, then being in a home has curtailed even more. I've had to dumb it down and set my standards low. Gone, are the halcyon days of getting in my wheelchair to go for a stroll or sit in the sun, or even sit in the sun room. Neither the nurses, nor patient care technicians, know how to put me in my wheelchair. Seriously. My chair has head controls and it is a bafflement. Most caregivers don't even realize I have head controls. First, they hit the left head pad when they lift the armrest which turns the chair on. Next, they sling me over and place me in the chair. The problem? My head, naturally, rests on the headrest, which accelerates and drives the chair and is beyond my control. Running over a caregiver or running myself into an obstruction are very real consequences of their ignorance. What could be worse? The caregivers remain clueless abo...