ALSCaregiver.com

It’s taken me some time to make this post for a variety of reasons.  On May 10th, my mother, the inspiration for this site, died in hospice.  Even though technically you could say she died of respiratory failure, we know she died of ALS, and hospice was good enough to put ALS down as her cause of death.  Some ALS deaths go unreported because doctors put cause of death down as a complication.  Mom wanted ALS listed, and it is.  She counts.

I first came down with plantar fascitis in both feet (plus Achilles tendinitis in the right foot) in October of 2008.  I was in a wheelchair for a month and still haven’t gotten over it.  I can’t stand up for more than five minutes at a time, I can’t lift anything heavy and I can’t walk over hard surfaces for any kind of distance.  Which means I still get stuck in the scooter at Wal-Mart.  I’ve been stuck in one since I was able to drive again by myself four and a half months ago.

I’ve added a page with video lessons for caregivers.  You can find a link at the top of every page and the left side of every page.  Hope you find it useful!

I wrote a song called “There’s No Place Else” for my mom, who most of you know has ALS (Lou Gehrig’s Disease).  After I wrote it several people said other caregivers would relate, so I posted it on the onewildchristy MySpace for anyone who wants to hear it.  It’s the first song in the player.

I’ve gotten several emails recently from visitors who are dealing with a brand new ALS diagnosis, so I thought I would write a little about what I went through at first.  I hope it’s helpful.

You should also see my previous blogs, especially Caring For The Caregiver.

If your loved one was just diagnosed with ALS, you’ve probably known something was wrong for some time.  ALS causes the body to lose function, so some loss is noticeable ahead of time.  You’re probably a little lost or in some amount of denial.  You might be angry.  All of these are natural human emotions.

It’s hard to describe the processes, thoughts and problems that can go on when someone finds herself in a motorized wheelchair.  It’s hard because we don’t go through it – the patient does.  While I can’t tell anyone that “things happen for a reason,” I do know that those happenings can be useful in the end when they happen to a caregiver.

A couple weeks ago, I got nailed with plantar fascitis in both of my feet, with some Achilles tendonitis thrown in on the right leg.  Mom had left her motorized wheelchair at the house while she went on a cruise, using one that was rented at her vacation spot instead.  So I got to spend a week using it and let me tell you, it was an experience.

This is a simple plea to people who a) have a handicap sticker, b) don’t have a handicap sticker or c) ever drive.

Those of you without a handicap sticker:
If you aren’t handicapped, please don’t park in handicap spaces, even if only for a minute.  It makes it very hard for people who actually need one.  And believe me, if we see your car in a handicap space and you don’t have a sticker or a plate, the words that will be uttered about your general person will be very colorful indeed.