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elacy86

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Joined
Jul 15, 2013
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Reason
Loved one DX
Country
US
State
Virginia
City
Fredericksburg
For some random reason, and maybe not so random, I decided to see if there were any ALS forums and came across this one. Really what led me here was the fact that I wish I could help my Grandfather and Grandmother with the world when it comes to ALS, and I was going to ask if anyone knew of a way to get a handicap van, or if there were any type of sweepstakes that were giving away vans.

I guess though I could give a little back story, I am 27 years old and am extremely fortunate to have my Grandparents still living. Unfortunately, I can only remember my Grandfather and his struggles with ALS. That in itself is a testament of his ability as well as my Grandmothers to fight this disease and move on, as again I am 27 years old and my only memories are of my Pops having ALS. I am not sure of the exact diagnosis date, and maybe I should ask, but I know that he has been living with ALS for close to fifteen years or slightly more. I often wonder about the disease, and why it seems to take some so fast and others slowly, and what was different in these individuals’ lives that may have been factors. PopPop was actually on a drug trial for ALS when he was first diagnosed, I remember numerous times my Grandmother joking that it was time for him to get poked, and him leaning over his walker ready for the pinch of the needle. Was it this that helped him? I can’t say for sure, but I often believe it has.

Pops has been wheelchair bound for some time now, he is 98% dependent on my Grandmother except when eating or changing the channels on TV. His speech is completely gone except for the mumble of words that escape, and amazingly my Grandmother can understand pretty much every word he is trying to say, she deserves a degree in her abilities to translate his ALS speech. He did get a board at one point where he could select words and build phrases, but he became easily frustrated with it and realized my Grandmother was easier, better, and quicker at getting his words and expressions out. I remember being young and afraid to be left alone with him for fear I would not understand what he would say and it would hurt his feelings. Now on trips down to visit I find myself too being able to pick up on key words, as we discuss our favorite TV shows.

As much as Pops struggles with ALS, and is the bearer of this crappy disease; my Grandmother as well as all the caregivers to this disease deserve a massive standing ovation. My Grandmother’s world revolves around Pops, his every need or want, she runs at the sound of his little beeper on his wheelchair, valiantly covers his mouth when he sneezes as to shield everyone from the food that would soon follow. All at the same time being outgoing, and forward thinking, optimistic, and loving, and cherishing her vow of “in sickness and in health”. I am not sure how she has done it and her herself not succumb to some sickness, I am sure there are moments of utter frustration with Pops and ALS, but she brushes it off and keeps Pops level headed.

I hope and I pray that I have many years to come with my Grandfather, and wish that I could have known him before ALS took his ability to communicate and function. He is an extremely intelligent man who spent his life working with NASA and the Gemini program, who dreamt and thought of things I could never have, yet he is locked in a shell of a body. ALS took from me a Grandfather I could have learned from, drove around cars with (he likes machines/cars/power). However, I find myself fortunate I still have him and that ALS cannot take away his ability to share thought and emotion.

To all of you that have been diagnosed, or have a loved one that has been diagnosed, you truly are an inspiration and I hope that this disease soon becomes a thing of the past. I look forward to reading your stories and insight, in the coming time on this forum.
 
Thank you for sharing your story. Your grandmother sounds like an angel. They both have a wonderful grandaughter and I'm sure they are very proud of you.
As for the van. I do not know of any sweepstakes. There are mobility places that you can rent a handicap accessible van. That might be beneficial if you need it for a day or two. Sorry I could not be of more help. Good luck and take care.
 
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