Why A Wheelchair For Pots?

[persephone]

Hello - just a quick question leading on from discussion on another thread.

I have used a wheelchair in my time because I got so hypotensive I would break bones on standing, and because the exertion was too great. However, I couldn't self propel. I had to have someone push me- the act of pushing my arms back to propel the wheels would have made my heart skyrocket.

In my admission in September I was in a wheelchair and self propelling in the wheelchair made my pulse hit 175 bpm.

This makes me wonder - those of you who use a wheelchair for POTS- how do you manage to also self propel?

I ask because thinking about this logically, if you have the strength and stamina to use your arms like that, while keeping your legs still and in a position that would let the blood pool in them, wouldn't it be LESS difficult and cause less pooling if you simply walked, but in cases of weakness, did so while holding on to sometimg- say walking with a cane, or a walker?

Would like to know what other folks think. As I said, I've been a wheelchair user my self, but I'm not now.

[crowebirds]

Unfortunately, dysautonomia is not a logical condition. This is in part what makes it so difficult to diagnose. For my daughter, her heart rate increases upon standing, which is due to the blood pooling. Having the blood pool away from your upper extremities is in her case what makes her weak and her heart working so hard what makes her tired. She does get an increased heart rate from sitting, but not nearly as bad as standing. She has chosen to use not only her arms to self propel, but for the majority of the time, she uses her legs as well. This is a good concept which helps to prevent blood clots from the lack of use. If she is every in a situation where she needs assistance (going up a steep grade), she does not hesitate to ask. Weakness can come from a variety of sources with DYS, but this is her situation.

[flower]

Hello Persephone :-)

I go out in a wheelchair because very soon after walking I get vertigo, feel nauseous, and my body 'tells' me to lay down.

Only recently since I've been able to go out in the wheelchair sometimes and not feel really sick, have I been able to self-propel a little. I can do it for a minute or two (with tiny breaks for catching my breath)on a flat surface mostly in a straight line. Afterwards I'm exhausted. I do it because I want to try and build up my strength.

Self-propelling a wheelchair is a heap of hard work as far as my experience, and yes I think walking is easier - but only if you can do it, of course. Maybe some people just can't be upright but are quite fit & strong aside from that? Or maybe they just push themselves extremely hard/have heaps of breaks. I don't know.

Take good care

p.s. Just read your other post - I too, will never drive now because of the POTS. I have had out-of-the-blue vertigo attacks for years (My lazy ex-GP told me I had 'visual migraine' before I got so ill) and if I was driving and it happened I'm 100% sure I'd have a car crash.

[sj75]

i have a wheelchair but try only to use it if things are really bad. As thats the case i cant propel myself and would only be able to be out at all for a very short amount of time as my body craves the horizontal position!!

[Sallysblooms]

I also wrote in the other thread that after improving I have been able to use my wheelchair. I use it in my house on bad days when I can't walk without being lightheaded. It was hard to push the wheels at first but it slowly improved. Stamina improved, muscles, etc.

This time last year I could barely walk, in bed all the time but my supplements have helped me to heal so well that I can usually walk fine, just not long periods of time. I am happy to see what the new year brings!

Many people with POTS use w.chairs. We are all different and each day is also different.

[ladyt]

Hi...

My wheelchairs are life making. And yes i have more than one. I have on electric for in side use, so no need to push it forward. And then i have a small manual outdoor chair and and el one. I actually use the manualy the most rigth now, when outdoors. Cause when going to town and stores its smaller and easyer. I am almost always whit some one so if its to strainuois they can push me. I ust got me some new wheels and they are ust wounderfull, now its easy breazy to push when the ground is flat, and i can push over bumps and short mini hills (when the day is right). And when i gett to much of anyting i gett someone to push me. The out door el chair i can elevait and rais my leggs and lower my back in.

I do walk indoor a lilte every day, some days only in the bathroom, since i cant take my elchair in there. other days more, depending on my symtoms. But for me, there is a worlds difrens between staning and siiting down. On better days, or a better hour during the day i can make some us by it by using the chair. if i walk i will gett much less done. Some days nothing at all. on days that standing is very dificult , but siiting is posible I can gett me some food and stuff much easyer than before.

For the last couple of years i have started too use diftent aids as posible, like the wheelchairs and a ust resntly a bed that can elevait my legs and head. They makes all the difrens in my life. i still spend most my life in bed or in the reclainer. But not all...

And for me it seems like using my arms, when not to strainiuos is lots easyer than trying to walk. I actually gett more exersis now, than i did when i tryed not using my wheelchair. But we are all difrent=)

[corina]

though i've worked on it when in rehab two years ago, i've never been able to propel my wheelchair myself. so the manual was for others to take me out and the electric wheelchair allowed me to go out on my own.

corina

[persephone]

You're just like me Corina- it would have been impossible for me to wheel myself. So glad to hear how well you are doing with the octreotide. Magical, isn't it! Now neither of us need worry about wheelchairs anymore!

[corina]

haven't been in my wheelchair since "kylie-day" (october 9th 2010), amazing isn't it?

when i got my wheelchair about 10 years ago it was to get the chance of getting out with others. i remember how i waited for one of the boys to come home and take me out. i felt like a puppy with the lead in his mouth desperately waiting at the front door. when i got my scooter (and later, electric wheelchair) i was really happy to have a little more freedom. being able to go out when I wanted/felt well enough, instead of depending on others. feel very very fortunate and thankful now that i can drive and walk again!

corina

[PCT_SAV]

I'm kinda late to this conversation but just recently was diagnosed with POTs and I am having difficulties walking, especially outside. My doctors have recommended I return to college using a wheelchair when around campus.; I am conflicted on how to feel about this and if this would even make a difference, and if I am overreacting with getting one. Overall I am preyttyyy overwhelmed. Any advice would help!

 

-PCT_SAV

[Pistol]

@PCT_SAV It depends. I was wheelchairbound at some time, but that was when I was not medically controlled, and I kept passing out and having autonomic seizures. If you have syncope when upright AND you have been refractory to all other measures ( salt and water intake, compression hose, targeted exercise, medications, IV fluids ) then you may have to look at a wheel chair or walker as an option. However - if you have just recently been diagnosed you probably have a lot more medications and treatments to check out before you go to such drastic measures. Remember - exercise is absolutely beneficial for us, we just have to do it within our limits. Also - you may want to increase your upright walking time gradually, instead of stopping it all togehter.