November 17, 2020 at 11:39 am #16820DagmarKeymaster
The emotional shock of receiving a diagnosis of ALS can play games with our minds long after we’ve left the doctor’s office. Although the memory of that visit may become a blur, certain statements and words remain stamped in our minds.
I experienced “thought loops” about my so-called “expiration date” of 2-5 years, and wrote about it in this week’s column: Banishing Thought Loops and Living One Day at a Time
Thought loops like mine, are easy to fall into with ALS and I’ve found that a change in perspective can help overcome them.
Have you had similar thought loops – – for example, about your life expectancy, symptom progression, or your future? Share with us what’s bugging you – – you’ll be surprised to find out you’re not alone in thinking this way. Plus, airing our mistaken beliefs brings welcome relief from watching them disappear.
November 18, 2020 at 8:01 am #16846Mary TiknisParticipant
I have to control myself from focusing on the thought loops
whenever someone mentions something that will happen in the future I think I wonder if I will still be alive
my biggest fear is being Totally dependent on others for ADL’s washing eating going to the bathroom etc
i am trying to remain in the present as much as I can an enjoy one day at a time
i am praying alot
it gives me hope that Dagmar is 10 years into the disease and is still so hopeful and able to walk with assistance
mary ann Tiknis
November 18, 2020 at 11:28 am #16855DuaneParticipant
ALS is not the only fatal disease. pALS need to try to keep things in perspective. Too many of us don’t. During my 14 years with this disease, I have tried to remain calm and go with the flow. I need assistance with some things but not all. So far as dying is concerned, I don’t fear death. It’s inevitable, and you never know when it will occur. I may die from something totally unrelated to ALS. Of course, I don’t want to hasten it.
November 18, 2020 at 12:53 pm #16860Kathy stitzParticipant
I have found myself having a lot of worry, fear, and anxiety about the future. This hampers my ability to live in the present and enjoy each day. It takes a lot of courage and strength just to make it through another day without giving up. It is inspiring to hear from people with ALS like Dagmar and Duane who have been living with this condition for several years. It gives others with ALS hope that maybe they too can live that long. I agree with Duane that people with ALS could die from something unrelated to ALS. I think, though , that when given a diagnosis of a fatal condition it puts you in a different kind of mindset because basically you are being told that the amount of time you have to live is more limited than it otherwise would be. This is very challenging and difficult to deal with. I try to take my mind off of it by keeping busy and keeping my mind occupied but it often still enters my mind. Having ALS is both psychologically and physically damaging but I am grateful for the support and advice from others who are also suffering a lot with this condition and understand what all of us are going through.
November 19, 2020 at 7:50 pm #16880Dave DahlParticipant
Staying in the present is tough. We have a new granddaughter and I wonder at times if I will get to see her go to school. I wonder if I will get to see my other adult children get married. It is one of those difficult to swallow pills that everyone faces. We are all on our way, pALS have an “expiration date” (I like that). I know I want to get really old and stinky- go way past time.
Let’s all try to be upbeat. Dagmar and others have such a positive vibe. I know I am working on that. My wife is great, always positive.
Hang in there all.
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