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  • Favorite methods for holding head up

    Posted by doug-frazier on February 7, 2023 at 3:20 pm

    I recently lost the ability to hold my head up.

    My clinic suggested two neck braces. I bought one but it causes jaw pain if I don’t get it on perfectly.

    I see some PALS with a black band on their forehead. Is that what this is for?

    I’m not in a chair just yet.

    I would appreciate any ideas for the best ways you’ve found to do this.

    Thanks

    Doug

    Roman replied 4 months ago 11 Members · 13 Replies
  • 13 Replies
  • Luke J Kelly

    Member
    February 21, 2023 at 7:42 am

    Hi Doug,

    I have the same challenges as you.

    I’m not sure what you might have seen other people wearing but, I have made a couple of braces using One Way Velcro, PVC pipe and a belt.   I start with a single piece of 1/2 inch PVC pipe cut to length to basically reach from the top of my head to just below my belt at my waist.   My wife made me a  head band from belting material and  One Way Velcro and she sewed a loop on the outside of the Velcro to fit around a copper fitting that fits over the 1/2 inch pipe.  The loop is Velcroed together with the same one way Velcro used on the headband.  The idea is that the fitting allows for some swivel to look from side to side.  I put the loop around the fitting, put the headband over my head with the pipe running down the middle of my back and then slide the pipe into my belt.  By tightening my belt this pulls my head up.  Make sure the pipe extends far enough below your belt that it won’t pop out.

    I drill a hole through the sides of the pipe at the top and bottom and run wire ties through them  to keep the fitting and the headband that’s attached to it from sliding off the pipe.

    What I believe to be the most important thing is to make sure you use the One Way Velcro it forms a strong connection.  Equally important is that the loop has to be <span style=”text-decoration: underline;”>securely</span> sewn on to the headband. My wife has a sewing machine and she makes several passes attaching the loop and the velcro pieces.   Just as important maybe the wire tie at the top of the pipe that keeps the fitting from slipping off.  My Chiropractor told me that there is 5 pounds of pressure for every  inch that your head drops forward.  I’m purely guessing that my head drop is about 4 inches so that’s twenty pounds of pressure.  That would be a lot of snap on your neck if the Velcro didn’t hold or somehow the headband came off the top of the pipe.

    As with your other brace, there are times I get it on just perfect and there are times I don’t but for me it is better.  I figure I can do things with it on for about an hour at a time and then I need to take it off and give my forehead a rest.

    If you’re interested I have a couple other variations but, this is what I started with.

     

     

     

     

    • doug-frazier

      Member
      February 22, 2023 at 8:17 am

      Luke: Great reply. Thanks.

      If I understand your description correctly, it sounds very similar to the device at stopheaddrop.com. Click on products.

      The inventor is an ALS patient.
      Would you look at that and let me know if it sounds similar?

      Someone suggested this to me but I have not tried it yet. I showed it to my OT this past week at Mayo Clinic Jacksonville and she said it looked worthy of a try. She also confirmed what you said that there aren’t any perfect solutions.

      This week they ordered a power chair for me and this comes with forehead strap like your idea but hooks to the chair in back.  Of course, this is not helpful for walking which I can still do for now, but it is great for sitting at a computer.

      I would like to hear your thoughts on the device if you have time since you have experience with this approach.

      Thanks again.

      Doug

  • john hamilton

    Member
    February 21, 2023 at 3:47 pm

    I , too, am now a head-drooper, and would be very interested in seeing a picture of your homemade device. Your good narrative makes it sound amazingly complicated, but, hey, whatever works, right?

    I tried a Headmaster neck brace ($150) and a couple of foam braces @ ~ $!0. I use the foam a lot. The front creeps up to my mouth, but still keeps me from otherwise choking, due to my now low-hanging chin. I angrily returned the first Headmaster brace because it was a size too big. BUt last week I caved and ordered a smaller size Headmaster with hopes that I at least won’t see double looking up, due to my droop.

    I read we PALS are each one in 10,000. Gotta keep a stiff upper lip; or at least try to keep our chins up.

  • Dianne

    Member
    February 21, 2023 at 7:27 pm

    My husband has a wheelchair that has been fitted with a head support that extends from the headrest to the right side of his head, just above the ear. It’s a couple of inches in height, and swivels away to the back when not in use. His head falls down and to the right, honestly we have stacks of support collars, hard, soft, in between- all hot and uncomfortable.  This side support has worked wonders! His chair leans back as far as needed too, so putting the computer screen higher on his desk enables him to lean slightly back to be onscreen all day, and his neck is not having to lift his head. We are Medicare age, so got the chair through them, paid extra for lift feature, a must.

    hope this helps.

     

  • Louis Savarese

    Member
    February 22, 2023 at 8:17 am

    Hi Doug,

    I’m having this issue myself but it manifests itself when I bend my head down and have to swing it back up.  Sitting, I dont have the issue when looking forward but if I’m on the computer like now I need to support my head with a hand.  I really appreciate Luke’s approach, it shows great American ingenuity.

    In terms of the band this is what you might be referring to:

    https://www.youtube.com/watch?v=Z1jWokmP8kA

    Stay strong and keep looking beyond the clouds : ))

    Lou

    • Cheryl Teribury

      Member
      March 1, 2023 at 10:15 am

      Hi Lou,

      Where can I get one of those?  The one I ‘m using is attached to my head rest.  I am so restricted.

      Thanks,

      Cheryl Teribury

  • Creighton Rider

    Member
    February 22, 2023 at 8:18 am

    Hi Doug- I have had ALS for 16 years.  As I my symptoms progressed, I experienced weak neck muscles way before my legs lost strength. I tried several “chin support” style braces, but couldn’t stand the way they restricted my jaw and kept me from pivoting my head or looking down.  So i invented my own that fixed those problems.  You can find  it on my website http://www.stopheaddrop.com and see if this is what you are looking for.

    Creighton

  • Albert Uster

    Member
    February 22, 2023 at 9:54 pm

    Hi Doug,

    I’ve tried several options but my two favorites are:

    1. Velpeau Neck Brace -Foam Cervical Collar – Soft Neck Support Relieves Pain & Pressure in Spine – Wraps Aligns Stabilizes Vertebrae – Can Be Used During Sleep (Enhanced, Blue, Medium, 3″) https://a.co/d/azEMEzU
    Amazon

    2. Head up collar: http://www.talarmade.com/

    Contact: Lori Watson; [email protected]

    This one is great and very supportive, comfortable and easy to use.

    Good luck!

    Albert

  • Luke J Kelly

    Member
    February 23, 2023 at 8:56 pm

    Hi Doug,

    Looks like you got a great discussion going.

    I should tell you, I am an accountant not an engineer but, Creighton’s brace looks like the real deal to me.  The band that Lou replied with also looks interesting.  It looks like a person should be able to sit in a regular chair with it on.  Has anyone tried driving while wearing it?

    I have pictures of the brace I made but, I can’t figure out how to copy them into this reply.  If someone can give me some direction, I’ll reply with pictures.

    Thanks,

    Luke

  • fred-schreiber

    Member
    March 1, 2023 at 7:56 am

    There are NO good head or neck braces for ALS victims. We tried three different brands, including Headmaster and OttoBock. They are OK for someone with, let’s say, a neck injury. But our son’s chin kept sliding off the Headmaster. His head kept tilting on it. The Headmaster kept collapsing. The OttoBock was like football gear and prevented him from leaning against something. He couldn’t sleep in it. He had violent yawning episodes and the head supports prevented him from opening his mouth. He came up with a solution: he wore a baseball cap with a non-stretchable band at the back of it. We tethered that band to the headrest of his wheelchair with a 1” wide adjustable velcro strap. We could tilt his head to his liking with it. The downside was that his forehead had a lot of pressure on it because the front of the baseball cap pressed there, so we kept having to pad the inside of the cap. He slept with his head tethered the same way. I looked at the stopheaddrop.com devices: how can anyone sit down and lean against anything without feeling the metal tubes?

    • doug-frazier

      Member
      March 2, 2023 at 3:31 pm

      Fred:

      I agree about the metal tubes. The only way you could sit down is if you had custom foam cushion made with a slot cut in it but I don’t know if that would work either.

      I ordered one because I can still walk and I want to try and continue that until it becomes unsafe. My right arm is going so some time this year my lack of arms will make walking unsafe.

      I was at my clinic a few weeks ago and they started the power chair process for me and said it had a device to support the head. It might be like the one Diane describes above, I don’t know yet. I think it  will be similar to the one you rigged up for your son (band on the forehead, attached in the back).

      Thanks

  • Joan

    Member
    March 2, 2023 at 5:57 pm

    I can’t hold my head up either

    the soft collars work marginally

    I have a hard class but rarely use it

    the best one for myself o found on Amazon called comfy med. Comes in sizes and not expensive

    Joan

  • Roman

    Member
    December 19, 2023 at 11:24 pm

    Excellent discution

    Also I have neck weaknes. I use a simple foam neck collar that I adjust with the velcro. Is very simple, lightwear and easy to use.

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