Personal Accounts and Other on ALS

[Lkaibel]

In an odd "coincidence" (I wonder if there is such a thing, really) about one year before my husband showed a single symptom of ALS, I started to poke around and learn more about the disease. I was inspired in part by my friend Lynn's husband's Dx. Wow, I thought, someone else with this? A long while back, another friend's therapist had developed it, but that was in the 80's. When Lynn's husband was diagnosed in November 2013 you could have knocked me over with a feather. I started to read medical stuff more on it. Horrified, it took me a while longer to get around to the personal accounts I read last year.

I read Susan Spencer-Wendal's Before I say Goodbye . I saw the movie "You're Not You" (fictional account). I read Darcy Wakefield's I Remember Running. Most recently, I saw the Steve Gleason documentary "Gleason".

A big thing with all of these, fictional and non is they involve younger people. Of all of these, Susan Spencer is the eldest - only 44 at Dx. Most people with ALS are older, as we know. You can really see how in some respects it honestly is even more heartbreaking to be young with ALS. Not just losing all those years, but children losing parents. It hit me that no matter how long Steve Gleason lives, his young son will never remember his retired NFL player dad walking or talking. Darcy Wakefield, 35 when she died left a toddler child.

Yet at any age, PALS and CALS lose so much. When the world looks at Brian, age 66 I am sure some see an older guy who "has to die of something anyway". Yeah, bite me! I am 51 and in the health he was in we probably had twenty years.

Still, these stories have helped me in some respects, inspired and soothed me, scared me and made me feel less alone. This is a lonely little experience in some ways, being connected to ALS. Very few have it relative to cancer or heart issues. My friend Lynn had a home care nurse (an RN, not an Aide) ask here what ALS was. Someone said to me a few days ago "what are the treatments for that?" when I said Brian had ALS. In these books and stories are others who get it, who know what that feels like.

Unlike me, my friend has avoided these stories. I understand that. I am just wondering what others have experienced in reading ALS stories, or seeing films, or if you avoid them also.

 

[Jhill]

In the beginning, because Bob was progressing so rapidly, I was too afraid to look ahead and know what was coming.
Now, I find it too heartbreaking to watch, knowing what they are dealing with and how very, very difficult it is.

Hugs,
Joan

 

[WendyWooG]

In the early days when I was first told this was a possibility, I did the research I watched the films looked up the YouTube blogs and prepared myself. I wanted to be aware. I didn't want to be frightened as things happened. It horrible and upsetting but if I know it's part of the disease, it kind of takes the edge off the scary. Because I know what's coming, as each loss, each little bit of me disappears, I cry but I don't panic. If I understand I don't fear.

I am lucky that my neuro has taken my attitude to this on board and will explain draw diagrams and get into the detail of what's happening if and when I ask.

Having said all that, once I know and understand I don't revisit. I don't continue to watch or take it in, as I don't want the knowledge to take over my life. Once it's absorbed and all the why and how questions asked and answered it's shut away along with the fear.

Wendy x