Announcement

Collapse
No announcement yet.

Survey for those with HSP or PLS.

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Survey for those with HSP or PLS.

    I want to do a survey. From where down are you weak/paralyzed? And how old are you (approximately)?

    . Knees down or Ankles only
    . Legs down (spinal cord equivalent of about L5)
    . Waist down (spinal cord equivalent of about T10)
    . Lower Chest down (spinal cord equivalent of about T5)
    . Upper Chest down (spinal cord equivalent of about C7)
    . Neck down (spinal cord equivalent of about C3)
    . Whole Body

    I've realized that the older I get, the further up my spinal cord this disease hits me. As a teenager, I was knees down. Mid-20's was hips down. Early 30's was lower chest down. Now, mid 30's, I'm at Upper Chest down (C7-8).

    I'm having to buy a very high back for my wheelchair because of this new progression, to replace the lower back that no longer supports me with my loss of upper back muscles, and am kinda sad about it. It just made me wonder how everyone else is doing.

    Thanks for answering! :-)
    6
    Knees down or Ankles only
    0.00%
    0
    Legs down (spinal cord equivalent of about L5)
    33.33%
    2
    Waist down (spinal cord equivalent of about T10)
    33.33%
    2
    Lower Chest down (spinal cord equivalent of about T5)
    0.00%
    0
    Upper Chest down (spinal cord equivalent of about C7)
    16.67%
    1
    Neck down (spinal cord equivalent of about C3)
    0.00%
    0
    Whole Body
    16.67%
    1

  • #2
    I am 29. It started in my legs in my teens and stayed there until 4 years ago, when I started having hand trouble. In the last year it has rapidly eaten through my trunk, back, neck, swallow, and speech, bringing impairment to all of those things. My lungs are thankfully only a little affected.

    Comment


    • #3
      38...from waist down...but I am affected in other areas...just not enough to really incapacitate me any.
      "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

      Comment


      • #4
        I'm 52, waist down and much like wheeliecoach, affected elsewhere but not as much.

        Comment


        • #5
          Clinically Diagnosed

          Hello,

          I am a 40 year old male who was clinically diagnosed after having some symptoms first thought to be ulnar neuritis and also a UTI. After getting the blood test, I am confirmed to have HSP with variants of the SPG4 and SPG7. I am on medicine to control my bladder spasms, and my legs fail after walking long distances. I also have pains in my upper and lower portions of my arms, which cannot be diagnosed with nerve conduction tests.

          Comment


          • #6
            Nothing to do with the survey, but it seems we're now up to 48 affected genes http://www.plosbiology.org/article/i...l.pbio.1000408

            Ian

            Comment


            • #7
              Ok, I'm running this quiz here and on HSP site on Facebook. Here's my results so far from the two polls put together.

              . 1. Knees down or Ankles only - 1
              . 2. Legs down (spinal cord equivalent of about L5) - 2
              . 3. Waist or Hips down (spinal cord equivalent of about T10) - 3
              . 4. Lower Chest down (spinal cord equivalent of about T5) - 0
              . 5. Upper Chest down (spinal cord equivalent of about C7) - 1 (me)
              . 6. Neck down (spinal cord equivalent of about C3) - 0
              . 7. Whole Body - 1

              I know it's a small sampling, but it shows me that having HSP anywhere higher than the waist is really rare. That's what I wanted to know.

              I had wanted to know if by "Hereditary Spastic PARAPLEGIA" they meant LOW paraplegia, like T10 or lower and down, or HIGH paraplegia, which is closer to T1. The difference is whether or not you have free movement from the waist up, or only from the shoulders up. Big difference.

              This disease has recently progressed, and I've now lost my back muscles. I'm amazed at how much of a difference it is from the low paraplegic that I was 2 years ago. So much less I can do now that I'm not only a wheelchair user, but I have to lean back in the chair all the time. :-( I know all injured quads have that much limitation too, but it's hard when you have to adapt to a whole new level of disability every few years.

              Thanks everyone! And I still welcome more responses to the poll, please. :-)
              Brooke

              Comment


              • #8
                Giving up my minimalist Tilite for good was a bitter feeling. Powerchairs just aren't the same.

                Comment

                Working...
                X