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  • Gaining Awareness, Fighting Denial and Accepting My ALS

    Posted by Dagmar on May 14, 2019 at 11:01 am

    I’ve always believed that I was open to new ways of doing things, but having ALS sure has put me to the test! My pride and a little denial have often gotten in the way of my seeing the obvious solutions to a problem. Thank goodness an “aha” moment came to my rescue and helped to point me in the right direction!

    To read what happened: I‘m Learning to Heed My ‘Aha” Moments

    Have you had to change your preconceived notions? Or increase your awareness of unnecessary struggles?

    How about your ‘aha’ moments that led to positive solutions for living with ALS?

    Let’s learn from each other.

    Diana Belland replied 5 years ago 4 Members · 6 Replies
  • 6 Replies
  • John Russell

    May 15, 2019 at 9:48 am

    Thanks for your excellent advice. I too have been (am) extremely resistant. In the past I fell often. I would accept my punishment and get back up. Recently I found I could no longer get up. Humbling and frightening. I have no help. My wife is in late stage Parkinson’s and could only do 911. 2 EMTs came to grab an arm an put me on my feet. This happened again a week ago.

    I did an online search and found a device called Indeelift. Looks like if U are unhurt, this will get U up easily. It is the size of an upright vacuum and can be rolled right over to U. If nearby, U can scootch over to it. I’m scheduled to see A PT about ways to get up and I plan to ask about an Indeelift.  Will post an update.

  • Dagmar

    May 15, 2019 at 11:05 am

    John, You are certainly not alone in being challenged (mentally and physically!) everyday by ALS.

    I’ve begun to think of it as slow motion DIY counseling – – each new challenge confronting and peeling back another layer of my preconceived notions about “how it should be.” Embracing the “new normal” is not for sissies!

    Do share what you learn about the Indeelift, and what your PT recommends.

    I am still able to lower myself (holding onto a chair) to the floor, one knee at a time. Once there (we have carpet!) I do 5-min of baby-like crawling – – about 40 hand-and-knee crawls forward, then backward to my chair. While I’m down there, I also carefully roll onto my back and roll-push myself back to hands-and-knees. Finally, I hold onto the chair and push-pull myself to standing (rollator ready for me to grab).

    This little (but mighty) routine has come in handy when I happened to fall several months ago (I thought my rollator was locked, but it wasn’t!). I curled up into a ball, rolled over to my hands-and-knees, then baby crawled across the room to my sturdy chair. From there I could pull up to a stand. Hope this experience is of help to others in the Forum. (I learned the skill from the site: …they have great videos)

    John, you are doing great! We pALS need to continue to do anything and everything to help us live well and accept the “new normal.” 🙂


  • Jean-Pierre Le Rouzic

    May 15, 2019 at 2:20 pm

    Your “baby-like crawling” text is very inspiring Dagmar!

  • Diana Belland

    May 20, 2019 at 11:38 am

    My first “a-ha” moment was when I realized I needed a shower chair!  We were able to get one from my ALS Clinic Loan Closet right away.  But my husband and I have been very slow to make other adaptations.  We keep talking about grab bars but haven’t installed them yet.  We just remodeled the master bath two years ago and love the way it looks.   We really need to “remodel” the shower now to make it safe for me.   I guess we’re still a bit in the “denial” phase.

  • Dagmar

    May 20, 2019 at 12:13 pm

    Here is a photo of our shower set-up.

    This used to be a walk-in shower with glass door and a curb to step over. We removed the glass; thus widening the entry and use a simple shower curtain. We also had the water control lever moved from being directly under the shower head, to the near wall. This way, a caregiver can turn on/off the water without getting soaked! Bottles are in a shelf with easy access from the chair. Hope this is of help to those planning some bathroom remodeling 🙂

  • Diana Belland

    May 20, 2019 at 2:48 pm

    That looks like a perfect shower set-up!  I will share this with my husband.  Our shower currently has glass doors and a curb to step over.   We like the “look”  but we have to accept that it’s not very practical, now.   I know we need to make some changes soon!  Thanks for posting the photo, Dagmar!

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