Search:

Type: Posts; User: Brooke

Page 1 of 3 1 2 3

Search: Search took 0.02 seconds.

  1. Replies
    32
    Views
    7,893

    massage, percussion massager, ice pads, heat...

    massage, percussion massager, ice pads, heat pads, epsom salt baths, and stretching (I've made up my own floor yoga to stretch those glutes).

    and yes, back when I was a walker, I had TONS of pain...
  2. Replies
    42
    Views
    5,413

    I made up a rule that I tell my kids: "I don't...

    I made up a rule that I tell my kids:

    "I don't want anyone in this family to be more disabled that I am."

    It's like my personal way of saying "don't break your neck", but with a visual example...
  3. Replies
    7
    Views
    3,256

    Poll: Ok, I'm running this quiz here and on HSP site on...

    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...
  4. Ok, now I'm starting to wonder what the...

    Ok, now I'm starting to wonder what the difference is between

    1) Complicated HSP,
    2) HSQ and
    3) PLS.

    I'm totally losing my back muscles, as well as the weak arms and hands. Can't sit up...
  5. Replies
    7
    Views
    3,256

    Poll: 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...
  6. Replies
    135
    Views
    75,444

    Poll: Hi there. I have Hereditary Spastic Paraplegia. ...

    Hi there. I have Hereditary Spastic Paraplegia.

    I can walk about 10-20 feet. That's as far as I can get without having to sit down and rest for an hour or two. I can also stand for about...
  7. Replies
    15
    Views
    8,573

    Thank you so much, SCI Nurse and wheelie coach,...

    Thank you so much, SCI Nurse and wheelie coach, for this advice. I'll definitely get on this and go find myself a physiatrist. :-)

    My arms are getting weaker as my disease travels up my spinal...
  8. Replies
    15
    Views
    8,573

    Here's what I mean: SCI Nurse wrote (earlier...

    Here's what I mean:

    SCI Nurse wrote (earlier on this thread):

    "Most neurologists are familiar with making the diagnosis, and most physiatrists would be experienced in management and care."

    I...
  9. Replies
    15
    Views
    8,573

    Can I ask something? And I mean this with all...

    Can I ask something? And I mean this with all sweetness and sincerity...

    What would a clinic that's good with HSP be good for? Is it just diagnosing?

    I have HSP too, and my doctor just...
  10. Happy Anniversary Danine!! :-) Be sure to spoil...

    Happy Anniversary Danine!! :-) Be sure to spoil yourself today in some way.
  11. Replies
    54
    Views
    8,415

    I use GABA and melatonin. Both are...

    I use GABA and melatonin. Both are over-the-counter, and are just more of what your body should be making anyway. GABA is great stuff, but be sure to drink enough water with it or else it won't...
  12. Congratulations!! I'm so happy for you. And...

    Congratulations!! I'm so happy for you. And thanks for the beautiful picture.

    Hiking is far and away the #1 thing I miss! I'm so glad you were able to find a way. :-)
  13. Replies
    46
    Views
    5,641

    Ya, I do feel like I'm over the hump. Somewhere...

    Ya, I do feel like I'm over the hump. Somewhere around 1.6 years I started feeling that way. :-)
  14. Replies
    173
    Views
    53,663

    I've heard there are teapot tippers, like this: ...

    I've heard there are teapot tippers, like this: http://westons.com/acatalog/Online-Catalogue-PR60011.html

    But personally, I just put my teapot away, now I boil water in the microwave. Then I...
  15. Replies
    46
    Views
    5,641

    Congratulations! That's a great achievement, to...

    Congratulations! That's a great achievement, to make it 2 years.

    I just hit my 2 year anniversary about 2 weeks ago!

    What do I do on anniversaries? Once a week, I meet with my friends at...
  16. Replies
    4
    Views
    1,820

    Thanks for all that advice. The good news is...

    Thanks for all that advice. The good news is that I don't need a chair -- mine is only 2 years old and it works fine, I'm just looking into power wheels.

    Yes, I have private insurance. United,...
  17. Replies
    4
    Views
    1,820

    Also, does normal insurance cover wheelchair...

    Also, does normal insurance cover wheelchair parts? All the websites make it look like everyone has Medicare. I don't have Medicare, I'm only 36 years old.

    Please help.
  18. Replies
    4
    Views
    1,820

    Actually, it's starting to look like I have...

    Actually, it's starting to look like I have Hereditary Spastic Quadriplegia, and not Paraplegia.
  19. Replies
    4
    Views
    1,820

    How do I find a DME?

    How do I find a DME?

    I have Hereditary Spastic Paraplegia. It's been coming on slowly for about 25 years. I've been a full time wheelchair user for over two years now. Because it's a slowly...
  20. Replies
    15
    Views
    8,573

    True. And my dr. was already familiar with stiff...

    True. And my dr. was already familiar with stiff man, so he knew how to test for it.

    We tested through Athena diagnostics for the amphiphysin antibody. It was negative, so that rules out Stiff...
  21. Replies
    15
    Views
    8,573

    Oh, good, for me, since my 2 neuros specialized...

    Oh, good, for me, since my 2 neuros specialized in Alzheimers and Stiff Man Syndrome, respectively.
  22. Replies
    15
    Views
    8,573

    Thanks, but I'm not likely to drive all the way...

    Thanks, but I'm not likely to drive all the way across the country to see a doctor to get diagnosed again with a non-treatable disease. If the disease had treatments, that would be one thing, but...
  23. Replies
    13
    Views
    8,367

    I have HSP too, and my fingers are weak, and tend...

    I have HSP too, and my fingers are weak, and tend to curl naturally. It's the complicated form of HSP. My description sounds like a spinal cord injury, incomplete, at around C8. My fingers are...
  24. Replies
    15
    Views
    8,573

    I have HSP, too. I didn't know where to go...

    I have HSP, too. I didn't know where to go either, so I just picked a random neurologist in town. Sure enough, he didn't know about HSP, but he was able to refer me to another neurologist who was...
  25. Yes, I have HSP. I have it at the C8 level. ...

    Yes, I have HSP. I have it at the C8 level. I've had it, slowly getting worse, for decades. Been a wheelchair user for 2 years now. Didn't get diagnosed until 10 months ago.

    From what I've...
Results 1 to 25 of 61
Page 1 of 3 1 2 3