#1 Thing I wish someone told me....

[wheelchair traveler]

I have been paralyzed for 14 years and the #1 things that I never heard from any rehab facility, doctor, nurse or physical therapist is how important what you sit on is... ALL the time. I am not just talking about a cushion in your chair, which is obviously really important, but also when you are not in your chair. The two biggest places that no everyone thinks of is putting a seat cushion down in your car if you drive and when you shower.

When you drive, use a low-profile ROHO seat cushion. This will help absorb the bumps in the road and protect your butt. Even if your shower chair is padded, for those who are paralyzed and others, this is not enough padding. Don't kid yourself and put down a low-high profile ROHO.

The three best cushions for your chair I have found in my years of experience (I've been through many many cushions) are the following:

1. ROHO - good for active people in chairs
2. Easy Ride - custom to fit your butt to completely get the pressure off
3. Aquila - has a motor that moves air about to relieve pressure from sitting.

Take care of yourselves fellow wheelchair users! I wish someone told me these two important life adjustments to prevent skin-breakdowns, so I would like to pass on this wisdom to you.

[diaspora]

thanks, wheel chair traveler! excellent post.
I agree about the extra cushion everywhere...
you know what... my padded shower bench bothers me a lot. you're fucking right, why kid myself? I know its from not enough padding; what extra cushioning can I get for that? something water-proof?


ALSO -- I SUGGEST this thread becomes the "what I wish someone told me" thread...

the #1 thing I wish someone had told me, before I discovered it myself;
WATCH OUT FOR FUCKING HOLES IN THE SIDEWALKS
-- ESPECIALLY WHEN YOU'RE GOING DOWNHILL

when I was first "getting out n about" and wheeling outdoors and becoming independant, I crashed so many times on cracks in the sidewalks and many other stupid mistakes like that.

[47+years]

I keep a low profile roho on my van seat, too. The roho cushion for the toilet seat would be great to put on the shower chair.

[sowseng]

Stimulite classic on my car, Jaylite on my wheelchair.

[SCI_OTR]

I have been paralyzed for 14 years and the #1 things that I never heard from any rehab facility, doctor, nurse or physical therapist is how important what you sit on is... ALL the time. I am not just talking about a cushion in your chair, which is obviously really important, but also when you are not in your chair.

I think it is safe to say that both KLD (SCI-Nurse) and myself would beg to differ. That is almost always part of any individual's pressure management plan.

[t8burst]

Well since you went there, I have to agree. I don't use a cushion on my chair when I drive. I just adjust my legs every 15 minutes or so I am not sitting in the same position for long periods of time.

[Brent K]

diaspora, neoprene has worked well for me as a shower seat cushion. It is waterproof. Very cushy if you use 1/4" thickness and layer the pieces together with a contact cement to your desired thickness. Mine is about an 1 1/2" thick. I'm usually on it for about an hour and a half to two and have had no pressure issues. This is the website that I have found it to be most reasonable.

http://www.closedcellfoams.com/neoprene.html

[amyk]

the #1 thing I wish someone had told me, before I discovered it myself;
WATCH OUT FOR FUCKING HOLES IN THE SIDEWALKS
-- ESPECIALLY WHEN YOU'RE GOING DOWNHILL

yeah, thats always a fun discovery to make. faceplant. i 'discovered' it was not such a great idea to speed down a curb cut into a cracked road surface in front of the adler planetarium in chicago on the 4th of july with several thousand spectators, and a panicky security guard who dialled 911. tip: dont do it.

[ipenguin]

I have been paralyzed for 14 years and the #1 things that I never heard from any rehab facility, doctor, nurse or physical therapist is how important what you sit on is... ALL the time. I am not just talking about a cushion in your chair, which is obviously really important, but also when you are not in your chair. The two biggest places that no everyone thinks of is putting a seat cushion down in your car if you drive and when you shower.

When you drive, use a low-profile ROHO seat cushion. This will help absorb the bumps in the road and protect your butt. Even if your shower chair is padded, for those who are paralyzed and others, this is not enough padding. Don't kid yourself and put down a low-high profile ROHO.

The three best cushions for your chair I have found in my years of experience (I've been through many many cushions) are the following:

1. ROHO - good for active people in chairs
2. Easy Ride - custom to fit your butt to completely get the pressure off
3. Aquila - has a motor that moves air about to relieve pressure from sitting.

Take care of yourselves fellow wheelchair users! I wish someone told me these two important life adjustments to prevent skin-breakdowns, so I would like to pass on this wisdom to you.

Wow thank you. What an amazing post!! )

[tooley]

Well since you went there, I have to agree. I don't use a cushion on my chair when I drive. I just adjust my legs every 15 minutes or so I am not sitting in the same position for long periods of time.

I too use nothing while driving, even long distances. There's just not enough headroom in my vehicle.
I'm curious how many long-time paralyzed chair-users actually use any type of extra padding in their vehicle. Not to take away from the OPs advice, but is this just an old wive's tale? The way it was worded, "to absorb the bumps in the road" - doesn't the vehicle suspension already do a pretty good job of that?
The best advice I think I ever got was to be a "wiggle-worm", never sitting still for very long. On road trips I tend to shift around at least every half hour, pull over at least every 2 for a good long weight relief.
Am I playing with fire?
I'm not looking to start a big argument here, just a novice looking for actual real-world advice from physically active (ie. able to do weight-relief) veteran wheelers.

[t8burst]

I too use nothing while driving, even long distances. There's just not enough headroom in my vehicle.
I'm curious how many long-time paralyzed chair-users actually use any type of extra padding in their vehicle. Not to take away from the OPs advice, but is this just an old wive's tale? The way it was worded, "to absorb the bumps in the road" - doesn't the vehicle suspension already do a pretty good job of that?
The best advice I think I ever got was to be a "wiggle-worm", never sitting still for very long. On road trips I tend to shift around at least every half hour, pull over at least every 2 for a good long weight relief.
Am I playing with fire?
I'm not looking to start a big argument here, just a novice looking for actual real-world advice from physically active (ie. able to do weight-relief) veteran wheelers.

I do the "wiggle worm" thing. Plus my mini has a pretty adjustable seat, I will raise it, lower it, make it recline more/less. To me the biggest problem on long trips is the tendency to stay in the same position for long periods of time. If I keep adjusting my position every 15 or 20 minutes I can do fairly long drives.