ALS News Today Forums Forums Living With ALS How do you prepare for the “not so ordinary” emergency?

  • How do you prepare for the “not so ordinary” emergency?

    Posted by Dagmar on April 13, 2021 at 5:18 pm

    Much has been written about the importance of pALS & cALS preparing for emergencies – – you know, natural disasters and unexpected visits to the hospital emergency room.

    Anytime a medical emergency happens, and the patient has ALS, it’s not only important to get to the emergency department (ED) quickly but also to ensure the ED staff understands what particular considerations an ALS patient needs. Especially important during this time of COVID-19.

    • Here’s a link to a post we shared earlier containing lots of good tips to use to prepare for a hospital visit.
    • Plus this article by the ALS Association, “Preparing for a Medical Emergency While Living with ALS.”
    But what if the emergency is man-made – – like being in a traffic accident or in a situation where there’s a shooter? Just having to mention this shows what trying times we’re in.

    What do you carry in your vehicle or on your person to help on-site EMTs know that have ALS? Does it include special instructions about your communication, breathing, or other ALS-related issues? Let us know your thoughts about this or any tips you can share.

    Deleted User replied 3 years, 1 month ago 5 Members · 9 Replies
  • 9 Replies
  • Allen Lewis

    April 16, 2021 at 3:32 am

    At one-year plus from als diagnosis I still have virtually full use of my limbs, can walk, drive etc. without problem. But I get cold sweats behind the wheel just imagining an accident or a traffic stop, because I CAN’T FRIGGING TALK! My mouth has ceased to function. (I believe it’s called bulbar onset). When I open my mouth to speak what comes out is saliva and incomprehensible drivel. My solution: I take my wife almost everywhere I want or need to go. And I take her anywhere she needs to go. We’re both long retired so she doesn’t mind, and appreciates the chauffeur service since she doesn’t drive. And, thanks to unspoken signals, signs and body language accrued over 36 years of marriage she understands about 90 percent of what I’m trying to say. So, that’s my emergency prep.

  • Dagmar

    April 16, 2021 at 12:20 pm

    I too share Allen’s fear of being in a traffic accident… and unable to speak well enough to communicate to EMTs.

    My husband and I have placed a large white envelope in the front area of our van’s glove compartment, with large letters: “In Case of Emergency.” In it, we have listed our health conditions and contact information for our doctors. Mine identifies me with having ALS, dysphagia, and dysarthria.

    Also, in my purse where I keep my medical cards, I have several of my neurologist’s office/business cards with her name and phone #. On the reverse side, I’ve printed: “I have ALS, I cannot speak well (dysarthria) and can only swallow thickened liquids.”

    Hopefully, this will be enough information to help any first responders.

    • Allen Lewis

      April 20, 2021 at 10:19 pm

      Hi Dagmar

      I read through your post a few times and am not 100% sure whether it’s you or your husband who’s doing the driving. If, after living with als for 10-something years (am I correct there?) you’re still able to drive, well, that’s very encouraging. At 79 years driving has become very meaningful for me since it’s really the only physical thing I can still do well, aside from walking. I feel curiously calm, comfortable and at ease behind the wheel, even for short drives to the grocery or pharmacy. And frankly I’m not sure which way I would go if given the choice between driving and talking.

      • Dagmar

        April 21, 2021 at 4:56 pm

        Hi Allen, sorry for the confusion. Yes, I have been living with ALS for 11 years now… but, I am not driving. I stopped driving in my 1st year due to my drop-foot (on the right foot) which made timely hitting of the accelerator and brake difficult. Soon after, I was issued my AFOs. Which are like wearing molded snow boots and had zero ankle flexion. If I wore them driving, I might break land-speed records… haha.

        I’m fine as a “go-along” with my husband driving.

        I’m glad you can continue to drive 🙂

  • Jim Knepp

    April 20, 2021 at 3:02 pm

    My Wife is normally with me – as a retired RN she knows my medical condition better than I do. I can no longer talk, so I always have my iPad with me so that I can use my “Speech Assistant AAC” app to communicate; my iPad also has the “ALS Key Medical Information” app. I also have a laminated ALS information card with the name of my Health Care Representatives and their phone numbers in the man purse attached to my pwc. Also in the man purse is a plastic, credit card sized card which contains copies of my Health Care Directives with contact information and a USB which can be plugged into a computer.

    • Dagmar

      April 21, 2021 at 4:57 pm

      These are great tips, Jim!

  • Deleted User

    Deleted User
    April 21, 2021 at 7:02 am

    I have dog tags with my name, emergency contact, and conditions listed on the back side. It has a medical decal on it and the chain stays around my neck 24/7.

  • Carolyn Barry

    April 22, 2021 at 5:13 pm

    John, I liked what you do, wearing the dog tag with medical information on it. So I decided to take a look on Amazon, and ordered one. I was surprised at how many details I could have engraved in it, and I know it’ll be great to wear. Thanks for telling us what works for you, as I hadn’t thought of this before.

    • Deleted User

      Deleted User
      April 23, 2021 at 3:08 pm

      Sweet! I got mine at Amazon also. You can pick colors and chose whatever you want to put on the tag. Designer!

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