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Are you comfortable talking about how ALS is impacting your life?
At times, I think that people are uncomfortable talking to me about having ALS. It does not bother me because I figure the more people asking questions, the more information and awareness occur. How do you feel about talking about ALS and how it is impacting you? Are there any topics that are off the talkable list?
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8 Replies
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I’ll admit that right after my diagnosis, I was embarrassed to talk about it. Heck, I didn’t even know what ALS was, much less having to explain it to someone else. But over time, I learned more about it, plus writing my ALS and Wellness blog was cathartic.
Now, I don’t bring it up in conversations unless someone asks me… I’m comfortable letting people treat me just as I am.
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I found it easy to discuss as a presymptomatic gene carrier. Not so much now that I have been formally diagnosed.
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I don’t mind talking about it at all. Maybe because I worked in healthcare for 25+ yrs I am used to talking about our bodies and issues that come up. What has surprised me is how little people know about ALS. Even MDs, Rn, PAs and all the rest. I have a PA friend that is insistent that slow progressing ALS (thats me!) is the same as the other fast progressing ALS just diagnosed sooner.. Whatever…..sometimes I realize you vacant talk to a rock.. I do my best to relay accurate info. Most people see Steven Hawkins in his last days so they visualize the end stages not all the in between and different manifestations of the disease. I talk about it so people are comfortable around me and know up front what I or someone else might need. I try to welcome questions
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Katy, I agree with you, totally! I’m amazed that medical professionals don’t know what ALS is. Even after I fill out all my medical history on their forms, I get asked about it.
I applaud your forthright attitude – – keep at it!
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Hi Amanda,
I have always found it easy to discuss my diagnosis from day one. I emailed all my relatives and friends shortly after I received the news. I thought that if I told everyone upfront, it would avoid the awkwardness of their hearing it in person and give them a chance to adjust to the shock of not knowing what to say. The symptoms were becoming obvious anyway, and everyone was supportive.
I began writing about how I dealt with the disease and the inevitable outcome I faced. My son gave me a subscription to an online program called Storyworth, asking me weekly questions that he and his wife had selected. It is intended to document your life for your family, which will be printed as a book upon completion. I decided to discard all the questions and instead wrote chapters about my journey with PLS. The first few chapters document the early stages of the disease, including the subtle signs of progression before diagnosis. The later chapters deal with grief, sadness, adaptation, and acceptance. Humor and memories are sprinkled throughout the memoir. I have also included music with most stories, which captures the mood or has inspired my writing. Through writing, humor (often dark), and music, I have found a bit of hope, acceptance, and peace. It has been my therapy!
I have completed 23 chapters so far (they are short), which Storyworth emails to the people on my list as I publish each one. I have 80 people who receive them. Many ask if I can add others to my distribution list. I always tell them, sure, it is for all to read.
<font face=”inherit”>The comments </font>on<font face=”inherit”> the memoir have been </font>endearing, supportive, and warm. The honest, sometimes raw, and occasionally funny interactions with friends, relatives, and even strangers improve everyone’s comfort level with me. In addition, each of them gains an understanding of PLS and reduces their anxiety of dealing with people with disabilities. My PA, OTs, and PT have said they appreciate the detailed pre-diagnosis symptoms that I wrote about. They said it made them aware of early, subtle things to watch for with patients. A few of my readers have PLS/ALS, and they appreciate me telling my story.
Are there any topics that are off limits? No, I will talk about anything. I am currently writing about death, albeit slowly. My thoughts on the subject are still forming. It’s not in a morbid, fearful way, but in a more philosophical way.
By the way Amanda, your good news always brings me Joy!
Len
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Yes, writing about what we’re experiencing is very cathartic.
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Similar to Len-Jax, I keep our friends and family informed about the journey G and I are on, and also similarly, the feedback is very positive. The ALS Association has a portal – LotsaHelpingHands – which we use. Not classic social media which we avoid. Numerous folks have responded that they need to get their affairs in order, too, or they acknowledge that they hadn’t ever thought about some of the topics I share. We have had seemingly infinite conversations about the process of a slow decline and how to adapt and still “live”. For some of these folks, they are thinking about end of life issues related to their parents, and they don’t know the words to use, or the tools that can help. We are super transparent and open and share the tips and tricks and show them the tools. Some of the folks on G’s “team” receive the updates/newsletters and never respond, but they are processing the information in their own way. I try to mix humor, the cat’s antics, medical realities and technicalities, as well as weather updates and info about our on-going projects. Someday, all of that writing may turn into some kind of memoir, or maybe not. Right now, the point is to let people know G is adapting and grateful for each day and their friendship.
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LandG, the LotsaHelpingHands site looks to be super helpful. Another one is CaringBridge. These online support communities prove that friends and family do want to know how we’re doing and how they can help.
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