Mature Life Features

Cecil Scaglione, Editor

Posts Tagged ‘Lou Gehrig’s disease

The ALS Journey

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Imagine a slope.

You’re standing on it. But something’s wrong.

You’re sliding. You try to dig in your toes and your heels. You try to walk backwards or to turn around and get back up. But you keep sliding.

You don’t feel any texture, you just keep sliding. You’re in total blackness. There is no light. There is no breeze or draft or odor. You’ve never been here before.

You can’t see where the slide bottoms out. You can’t see if it levels off. Or if it undulates up and down.

And you keep sliding.

You realize there’s someone beside you. “Are you OK,” you ask.

The response is quite close. It’s a bit slurred. Like a person who just tumbled out of bed. Or has had a bit too much to drink.

You touch an arm and follow it down to the wrist and hand. The hand accepts yours. It feels cool and smooth — a bit like metal — but it’s soft and flaccid. Instead of gripping your clasp, it sort of shakes it to let you know it’s there.

You’re still sliding. Both of you. You don’t know how fast. You start wondering if you’re going to bump into or trip over anything.

There’s a sound you don’t recognize. Their hand slips out of yours.

“Are you OK,” you ask. “Yesshh,” you hear. It’s still close but the source seems somewhere.

You reach out and around and touch an arm. You try to help them stand up but there’s no cooperating strength or self-help.

“Can you stand up,” you ask. You’re told they can’t feel their feet and their legs won’t move.

You keep on sliding.

Then you hear coughcoughcoughcoughcough khaaaccccch coughcoughcoughcough. You reach out to help but you can’t reach them. You didn’t realize it but they’ve slid somewhere out of reach. There’s nothing you can do.

You both just keep on sliding. The coughing is sliding with you.

Then you hear a different sound – short gasps. “Ican’tbreatheIcan’tbreathe” they’re trying to shout but they start to choke. It sounds like they have a plastic bag tied over their head.

Your foot hits something so you reach down to pick it up. It’s feels like a sandwich. Food. It smells like ham and cheese.

Then there’s a new sound. “I…can’t…swa…llow.” You feel guilty but you have to eat. It’s difficult to push it through that knot in your stomach. You have to stay strong to try to help them.

And you keep on sliding and sliding and slid…

 

 

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Written by Cecil Scaglione

June 17, 2018 at 8:56 am

Bev’s Being Battered . . .

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Finally getting back to work on this venue after being blocked out by some cyberspace quirk. Had to use Beverly’s email address in settling for whoknowswhat reason so anyone responding to messages will have to do it on this site or address it to cecilscag@gmail.com.

Much has happened since we were cut off from posting last December.

The most devastating has been the medical blows landing on Beverly.

It all began early this year when a neurologist diagnosed three possible problems for her rapid loss of motor facilities: a neurological disease, cancer and/or ALS. Specialists were recommended and visited.

The first diagnosis was cancer in her left breast and two malignant tumors in her spine. Bone-building IV every four weeks was initiated immediately and radiation and chemotherapy were both prescribed. Bev started a five-days-a-week radiation treatment for three weeks and the thousands-of-dollars’-a-month’s worth of chemotherapy medication was arranged without cost through the efforts of a patient advocate/support worker at the cancer clinic.

Both prescriptions were disastrous.

The radiation launched a serious coughing problem that racked her for hours and hours and still attacks out of nowhere. After her ninth of 15 scheduled sessions, she told the doctor she wasn’t taking anymore, and why. She also told the oncologist she was dropping the chemo medication because it made her sicker.

By this time, she also was diagnosed with ALS so both doctors (radiologist and oncologist) agreed with her so her life will be more comfortable. She’s still getting the IV every four weeks and has blood drawn monthly to monitor the progress of Lou Gehrig’s disease. All we can do is try slowing it down and help her maintain some level of comfort.

She was told she probably has had ALS for the past half-dozen years, leading family members to speculate on whether or not she needed the spinal surgery that was performed in San Diego to stop the deteriorating use of her right arm and hand. A possible trigger was son Ross’ death.

She now uses a walker and no longer drives. Through contacts made at the first of her quarterly clinics with the ALS doctor, she has received a transport wheelchair, toilet support bars and large-handled eating utensils from the ALS Association. A doctor’s prescriptions also got her a respiratory machine to assist her breathing and we’ve yet to make an appointment to get fitted for toe braces prescribed to keep her toes lifted so she doesn’t trip and fall, which would be crippling.

We’re also talking with home-care workers and hospice/palliative care organizations to identify pathways to take as the unknown continues to happen. The ALS Ass’n is scheduled to deliver a power chair this week so she can get around more easily.

Despite being unable to perform such everyday actions as driving five minutes to visit the grandkids and opening bottles of water, she still erupts into her solar smile when someone calls or her favorite horse wins.

Her birthday was June 6 and she had a good day opening a pile of cards, phone-chatting with new and long-time friends, swapping plans with daughter Heather who came to visit and then elevatoring downstairs for dinner that ended with balloons, a cake and sing-along greeting.

 

Written by Cecil Scaglione

June 15, 2018 at 7:59 am