Alicia’s ALS Battle

June 2016-Father’s day B-B-Q at my house and all is well,

August 2016-Chenango Blues Festival in Norwich, NY.  Meeting Alicia and Karl for dinner first. Alicia needed assistance as she walked out of the restaurant.  She said it was just a little vertigo-something she’d dealt with off and on since we were kids.

September 2016-Alicia realized she could no longer hold her bow for playing cello.  She started seeing doctors in Binghamton who all assured her it was not ALS but perhaps  myasthenia gravis.  She was also having trouble swallowing-dysphagia-frequently choking on fluids, her own saliva and occasionally food.

October of 2016-the whole family gathered for new family pictures to celebrate our parent’s 60th wedding anniversary. Alicia was not able to stand for extended periods, and her speech was becoming garbled.

November 2016-the family Thanksgiving dinner at a restaurant in Baldwinsville and Alicia is using a walker.  She has an abnormal gait and is only 52!  This shouldn’t be happening to my baby sis with all the doctors saying, “It is not ALS.”

December 2016-we were helping out at Alicia and Karl’s house because the need for assistance with daily necessities was increasing.  Quickly!  The day after Christmas was another doctor visit in Syracuse.  Again, "It is not ALS but stress induced.  Just relax, go home and live your life."

I never saw anyone work harder to defeat this thing that “is not ALS.”  Next stop-Rochester.  As before, wait a few weeks to get in.  Swift degradation like this doesn’t have a few weeks if we’re going to get out ahead of it.  But we wait.

February 2017, Alicia gets into U of R neurology. She is now in a wheelchair and needs help from her husband and a sister getting out of it and onto the exam table. They spend all day with her.  She leaves with the confirmation, “You have ALS.”

Within 2 weeks Alicia is in Sitrin Home in New Hartford. They have a wing specifically for ALS and Huntington’s Disease patients.  They were wonderful.  But, with the swift degradation of Alicia’s abilities, they were not going to give her the eye gaze machine to help communicate, or the motorized wheelchair because, “By the time we get them modified specifically for you, well…..there really isn’t enough time.” 

ALS Upstate NY Chapter to the rescue!  They loaned Alicia an eye gaze machine.  She didn’t need to learn how to use it.  She is a computer software engineer.  She writes and speaks code.  She told the machine what to do.  With her eyes! 

ALS Upstate NY also gave her a motorized wheelchair to use.  My aunt Esther happened to be present when they brought that for Alicia.  Aunt Esther tried to get her to “slow down!” with the thing.  But, Alicia was having a blast with her new freedom, racing up and down the halls, laughing as much as her ALS would let her. Oh the joy!

On a subsequent visit, our sister Rachel (Rae) got a tour of the dining hall and Alicia’s room.  Alicia would lead Rae to a location and just stare at a spot.  When Rae realized Alicia was looking at a spot on the wall or closet or furniture, Alicia would just go, “oops” which is about the extent of speech she had left. 

We are so grateful Alicia never lost her sense of humor through her battle.  It helped us all cope. And without ALS Upstate NY Chapter providing the equipment, her frame of mind would have been much different. 

As quickly as Alicia’s abilities were fading, she predicted she’d pass around June of 2017.  But we got to enjoy her until March of 2018.

She was able to make it to two family reunions in the area and enjoy the solar eclipse on the lawn of Sitrin Home with her astronomy buff husband who set up his telescope, had all the special glasses, and shared the experience with all the staff and visitors as well as his wife.

She was able to celebrate her 25th wedding anniversary with her husband and entire family present-right there at Sitrin Home.

She was able, thanks to technology, to be present for our mother’s funeral one week later, and to speak through the technology via her eye gaze machine.

She was able to enjoy movie dates and dinner with her dad-he had never seen Princess Bride.  He enjoyed watching her laugh as much as-if not more than-the movie itself. 

We cannot thank ALS Upstate NY enough for the role they played in improving Alicia’s quality of life!  So, we support them so they can support you and yours.  Would you support them too?  Donate to Team Alicia right here, or to ALS online at http://www.alsaupstateny.org

Thank you.