New reality TV show PUSH GIRLS on SUNDANCE

[sherocksandsherolls]

To answer Brian; they say some have lower bp and it is normal for me but only got the lower reading while at home in am and I was given midrodrine but I stopped taking it last year as I had stomach muscles tightened lol so I figured I would ween off with binder still in use. But these girls 3 of them are low paras so they have not this issue. Haven't seen Angela the higher level girl standing yet.

Fuentes it is good you have been doing it all along but I have not and been injured since 18 so not sure it would even be safe now even if I popped a pill lol

[~Lin]

There's a soap opera in Britain that has an actress with my disorder that is a power chair user. I watched a ton of the episodes on youtube just to see. She's the first full time disabled actress on the show, Coronation Street. Her character has the same disability but its not the point of the character, she's just a character on the show who happens to have EDS and use a power chair.

The girls do work, they showed Mia at work in one episode. She talked about how she works with clients on the phone a lot before they come in and see her in person. She mentioned some seem really surprised to see her in a wheelchair. There was also a clip of the girls talking about their jobs, I don't think Angela was in it though. I'd like to see them at work more but that must be more complicated to get permission to film.

[SCI-Nurse]

Just a few clarifications:

Standing is important, if you are safe to do it. Not everyone is. If you have advanced osteoporosis already, then standing puts you at risk of fractures and slipped epiphyseal plates in your bones (esp. if you are younger).

There is little or no scientific evidence that passive standing either prevents or treats osteopenia or osteoporosis in SCI/D (in spite of what the manufacturers of standing equipment claim). All the studies that show effectiveness for therapies to prevent and treat osteoporosis included ACTIVE muscle movements (such as with FES) or the use of vibratory therapy (standing on a plate that vibrates at a specific amplitute and frequency). Passive movement, such as with a standing glider, has also not proven to be effective in osteoporosis prevention, but can have cardiovascular benefits.

Standing is most valuable in prevention of contractures (esp. drop foot) and maintenance of range of motion, promotion of improvement of orthostatic hypotension, and bowel and bladder function. Of course it also has significant psychological advantages (looking others in the eye for a change, for example).

When a person with SCI (esp. at T7 or above) sits or stand ups, their blood pressure drops. This is NOT because they have a "weak heart". It has to do with the inability of the brain stem to send a message down the cord to the lower thoracic cord where sympathetic nervous system nerves leave the cord. These nerves are responsible for the postural reflex that causes blood vessels in your legs and abdomen to constrict when you are upright. The brain knows it needs this constriction to increase peripheral resistance, which is how your blood pressure stayed up when you stood up when you were AB. Without this intact connection, your blood vessels (arteries) stay dilated, and it is difficult for your body to maintain sufficient blood flow up-hill to your brain. This is the opposit of what happens during autonomic dysreflexia, when pain causes a reflex stimulation of these same sympathic nerves and causes severe vaso-constriction.

Progressive tilting (such as on a tilt table) and then progressing to regular standing helps to manage orthostatic hypotension. We don't know exactly how it does that, but plenty of studies show that is the case. You may initially need to use compression hose, Ace wraps and an abdominal binder to get into an upright posture though, and some need to continue the use of these devices. Medications such as Midodrine may also be needed (this drug causes peripheral vasoconstriction...simulating the action of the lower thoracic sympathic nerves).

There is no absolute number for what blood pressure is too low. It is based much more on the signs and symptoms you present. If you are confused, dizzy, nauseated, or actually pass out, the blood pressure is too low. If you stop making urine, your blood pressure is too low. If you have chest pain or are short of breath, your blood pressure may be too low. Otherwise, many people with SCI tolerate systolic blood pressures in the 70-90 range on a regular basis.

(KLD)

[crypticgimp]

ty kld for that clarification. my drs really want me on an FES bike, they dont feel standing will do me any good if it hasnt already. but none available in the area and my apartment cant fit one. my bp is the same as all my brothers who are also young and active (We all do sports/exercise, the youngest is 9 the oldest is 30) so it's around 100/60. i'm 27yrs post with no dropfoot, osteoporosis is minimal, no contractures of the hip flexors (i'm apparently super bendy so my joints hyper extend) and i'm healthy.

[forestranger52]

My systolic blood pressure is usually 84, happy when it hits 90 or 100. Any higher and I am likely partially dysreflexic. Always 120 before.

[betheny]

Mine was 131 last week when I went to the ER w/ a kidney stone. I was wayyy dysreflexic. And nobody knew what that was...It was 96 when I left. Back to my happy place.

[november]

Originally Posted by SCI-Nurse

Just a few clarifications:

Standing is important, if you are safe to do it. Not everyone is. If you have advanced osteoporosis already, then standing puts you at risk of fractures and slipped epiphyseal plates in your bones (esp. if you are younger).

There is little or no scientific evidence that passive standing either prevents or treats osteopenia or osteoporosis in SCI/D (in spite of what the manufacturers of standing equipment claim). All the studies that show effectiveness for therapies to prevent and treat osteoporosis included ACTIVE muscle movements (such as with FES) or the use of vibratory therapy (standing on a plate that vibrates at a specific amplitute and frequency). Passive movement, such as with a standing glider, has also not proven to be effective in osteoporosis prevention, but can have cardiovascular benefits.

Standing is most valuable in prevention of contractures (esp. drop foot) and maintenance of range of motion, promotion of improvement of orthostatic hypotension, and bowel and bladder function. Of course it also has significant psychological advantages (looking others in the eye for a change, for example).

When a person with SCI (esp. at T7 or above) sits or stand ups, their blood pressure drops. This is NOT because they have a "weak heart". It has to do with the inability of the brain stem to send a message down the cord to the lower thoracic cord where sympathetic nervous system nerves leave the cord. These nerves are responsible for the postural reflex that causes blood vessels in your legs and abdomen to constrict when you are upright. The brain knows it needs this constriction to increase peripheral resistance, which is how your blood pressure stayed up when you stood up when you were AB. Without this intact connection, your blood vessels (arteries) stay dilated, and it is difficult for your body to maintain sufficient blood flow up-hill to your brain. This is the opposit of what happens during autonomic dysreflexia, when pain causes a reflex stimulation of these same sympathic nerves and causes severe vaso-constriction.

Progressive tilting (such as on a tilt table) and then progressing to regular standing helps to manage orthostatic hypotension. We don't know exactly how it does that, but plenty of studies show that is the case. You may initially need to use compression hose, Ace wraps and an abdominal binder to get into an upright posture though, and some need to continue the use of these devices. Medications such as Midodrine may also be needed (this drug causes peripheral vasoconstriction...simulating the action of the lower thoracic sympathic nerves).

There is no absolute number for what blood pressure is too low. It is based much more on the signs and symptoms you present. If you are confused, dizzy, nauseated, or actually pass out, the blood pressure is too low. If you stop making urine, your blood pressure is too low. If you have chest pain or are short of breath, your blood pressure may be too low. Otherwise, many people with SCI tolerate systolic blood pressures in the 70-90 range on a regular basis.

(KLD)

Thanks for explaining this to others KLD. I think I'll print it out. So many people, SCI included don't understand the low blood pressure issue and why it happens. They either freak out when it's low and it isn't an issue and having no symptoms or don't understand how big of an impact it is on my daily life when I'm having symptoms and am faint/dizzy.

sherocks while there is little evidence that standing does much for bone density [though you should do it for other reasons] there is some evidence that says fes builds bone density. Ride that bike! Do you get faint riding? I did one morning I road, but it was early and had hardly ate/drank.

[november]

Someone mentioned Auti crying 10 yrs post injury. She is actually much further post injury, but anyway I'm almost 10 yrs out and still have moments I cry and am upset thinking or talking about the situation. I don't see how that means someone hasn't adjusted well? It doesn't happen often to me, but it does happen.

I want to know why none of them have quad or paraguts, lol. Tiphany's body looks hardly affected on the outside. She has really been able to keep the muscle mass.

[brian]

Originally Posted by SCI-Nurse

many people with SCI tolerate systolic blood pressures in the 70-90 range on a regular basis.

Wow. Thanks. I'm t4 and mine is a 'normal' 120/80 or whatever so that's why 90/60 sounded crazy to me. Do you think if she stood on a regular basis her body would correct itself or is this just a thing that will happen now?
I remember being a little dizzy the first time I stood, but it went away pretty quickly. Also, right after my injury, I was prone for about 3 weeks. The first time I sat up I passed out in about 7 seconds. Now, of course, I can sit just fine. Is that a similar nerve situation?

There was one time about 7 years ago when I couldn't cath, no matter what I tried. By the time I got to the hospital my bladder was really distended and my blood pressure was a whopping 300/200. It felt like my head was going to explode.

Good times.

[SCI-Nurse]

The early dizziness you had was due to the hypotension that I described above.
The last scenario you describe is classic autonomic dysreflexia.


(KLD)