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    • #12809
      Amanda
      Keymaster

      What topics or what kind of information are caregivers interested in? What kind of information would be helpful? Are you interested in how to take care of yourselves? ALS research? How to get involved in ALS research or advocacy?

      What kind of information would you like to hear on the Flash Briefings? Has anyone had a chance to listen to any of them? What are your thoughts? Were you able to easily access them from the forum?

    • #12937
      Stacy
      Participant

      I’m relatively new to being a caretaker for my dad who was recently diagnosed with ALS.  There is so much that I didn’t know and only through either my research on line or through my local ALS Association contacts that I’m finding out about things on how to care for my dad.  The medical staff are caring but I’m finding aren’t  very knowledgeable when it comes to this disease.  What would’ve been helpful for me at the beginning was tips on how to stay one step ahead on things that ALS patience need in each stage.  I know that every case is different, more common things like blood clots that I’m just now finding out is something common, unfortunately I didn’t know and am currently in the hospital getting that resolved.

    • #12941
      Dagmar
      Keymaster

      Hello Stacy – – I applaud you for taking on the caregiving responsibilities for your father. You are right, that every person with ALS follows a different journey. Your goal to “stay one step ahead” is admirable but with ALS, it is difficult to take a systematic approach. Symptoms vary widely as well as pace of progression. Plus, your father’s age, general health and existing conditions at time of diagnosis all affect the course of the disease.

      Blood clots “may or may not” be common. I have never experienced them and I’m in my 9th year. Although, patients who are sedentary or bed-bound may have more risk of developing them.

      My advice is to be a “generalist” – – have a good understanding of what ALS is, and, the possible directions it can go. Develop a good relationship with your ALS Assoc. coordinator; they will be very helpful. Attend a caregiver support group: ask questions, meet others you can email or call.

      https://alsnewstoday.com/what-is-als/

      https://alsnewstoday.com/als-symptoms/

      And finally, do post your question here in the ALS Forum. There are many caregivers here and we can support and learn from each other. You are not alone. 🙂

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