Sunday, May 10, 2009

May is ALS Awareness month

This article is taken from the MDA / ALS Magazine which is sent
to all those who are registered with MDA and have ALS.
Since May is ALS Awareness month -the magazine is featuring
families of long term ALS survivors -
Marcie being one such survivor-
and myself, her mother.
’It’s What I Do’

It’s all about family and faith, says Linda Gibson of Arlington, Texas, a full-time caregiver to her daughter Marcie, who has lived with ALS for more than 15 years.
Linda Gibson has been her daughter’s full-time caregiver for 15 years.
A preschool teacher for 25 years prior to Marcie’s illness, Gibson sometimes misses her career, but says, “taking care of Marcie is what I’m meant to do now, and I’m so glad I get to do it.” To this end, she has become an expert in Marcie’s high-tech care and also has learned to take time to care for herself.
A grandmother of two, Gibson says her mother-friend-caregiver relationship with Marcie, now 38, has evolved since Marcie received her diagnosis at age 23, just as she prepared to graduate from college.
“I had to learn how to stop treating her as a child and start treating and listening to her as an adult,” admits Gibson, who prides herself on being able to read Marcie’s eyes. “I always try very hard to respect her wishes, and Marcie always makes her own decisions.”
Gibson finds ways to take some time for herself. While Marcie’s using her eye-tracking communication device, Gibson surfs the Internet and communicates with other parents of children with ALS. She also enjoys gardening, crocheting and scrapbooking in free moments here and there. In the evenings, while Marcie’s father is at home, Gibson goes out for a 45-minute to an hour walk, or runs errands.
She advises other parents/caregivers to try to live as normal a life as possible.
“Your child is always your child no matter what their age. I’m very proud of my daughter and the way she’s fighting ALS. I just do anything she needs. It’s just what I do."

You can view the entire magazine at:

In the picture, which was staged and taken by me of myself using a try pod and my new digital camera. I even had to lean how to set the self timer on the camera. That is Marcie's ventilator -her vent -for those reading this and you do not know what that is - that is the machine that breaths for her.

And featured on MDA's web site:
are the story's of 30 PALS (people with ALS) - A different story each day during the month of May. Featured on Wed. May 6th was Alex's story - Alex's Mom and I are "Internet" friends. He is a 19 year old young man DX last year with ALS.

Please read his story - - -

Anyone can be DX with ALS - no matter their age - Marcie was 23 when she was DX in 1994 and Alex was 18 (DX in 2008) - Libby was 23 (DX in 1994)- Amber was 23 (DX in 2008) and Haley was only 16 (DX in 2008) - we as mother of these "kids" stick together on the Internet encouraging each other -

And on Sat. May 16 you will read about another of my Internet friends Mary - Mary's sister-in-law, Faith, goes to my church. Faith connected Mary and I soon after Mary was DX with ALS. Mary and I communicate a lot by way of e-mail. We are about the same age.

Clink on the link below to read about Mary and all the 30 PALS featured in May on

Anyone's Life Story:


And I hope everyone had a Happy Mother's Day -I did - my other daughter, her husband and my 2 grandsons came by this afternoon for an hour - Marcie had just ask to go outside when they got here so we sat outside in the sunshine. Soon after, my son and his wife came for supper - it was a very nice day -

Thank You God for this nice Mother's Day for me and I hope many other mothers also.