[rue2you]

Wow, I feel like I don't even know where to start.
First of all, I am paralyzed from my waist down from Progressive MS - not from some kind of accident so medically, I feel like if I had been in an accident, I would have been sent from the hospital to rehab, but because it is from a disease, it has been more of "Oh, this is sad and we are sorry. We will teach your husband how to move your legs so you won't get stiff." I was told that OT was for people that had trouble waist up and that I did not need it. I have since learned from someone I was introduced to through this forum that that is crazy! I am only 32 years old, have 5 children, and am full of life. I want to live my life the best way I can. I have been paralyzed completely (I can move my toes down) for 5 weeks now and everything I have learned is from here and You Tube. Since I have Progressive MS, they have told me that this is permanent. My legs have been awful all year and have gotten worse and then overnight (literally) they were gone. The crazy thing is, is that I feel better now than I have in a year. I was in extreme pain for all of 2008 and I couldn't walk for more than about 15 minutes. Now, that I am paralyzed I have no pain (at least if I do, I don't feel it), and I don't think I realized how much energy it was taking out of me just to get from point A to Point B so I feel like I have energy back. Having said all that, I have questions!
At first, we had to rent a cheap hospital wheelchair. That thing killed my back and my bottom. I have some sensation in my bottom and pubic area if you apply pressure but have no feeling if it is lightly touched. From about my hips down feels completely gone. If you would squeeze my legs very tightly, then I feel a little pressure feeling. So, if I was feeling sore in my bottom, I knew if must be pretty sore.
I have insurance through Medicaid so they said it would take at least 3 months to get a custom wheelchair. They told me to stay out of it unless I just had to transport somewhere. That meant I had to live in my living room chair for at least 3 months - all through spring and in to summer!! No way!! So, I got on Ebay and found me a gently used Invacare A4 for about $300. I was very excited!! The measurements aren't perfect but it is much better than what I had. I got online and read the owner's manual and learned how to adjust a bunch of things to make it fit me better. I had read on here about cambor, center of gravity, foot plates, no arm rests, lower backs, and all such things. This chair has been so much better!!
Having said all that, we are ordering for me through Medicaid an Invacare Top End Crossfire T6A that will be custom to me. I know that Medicaid will only pay for certain options, but I can pay for the other stuff that I want extra through the wheelchair company when they actually order the chair (after Medicaid has approved it). What I want to know is, how do you know what options to pick?
For example:
1. Front tire size
2. Type of tire
3. Type of handrims (mine on this A4 are very slick and I end up pushing with the tire a lot and the palms of my hands are getting very calloused and staying sore.
4. Type of seat cushion
5. Height of back
6. Arm rests or not?
7. Push handles or not? Why would someone not have them?
These are all things that I don't know about!!
Also, I want to drive again!!! I don't have a clue about hand controls and what kind to get. Do you take special classes or do you just practice in an empty parking lot until you get it? Do you have to go and get a different drivers license with new restrictions or keep the same one you already have? Do hand controls stay on a car permanently or will they come off when my hubby drives?
I am sure I have more questions but maybe this is a start!! I should really close this novel!
Thank you all for your help. You have all helped me become more independent just from reading your answers on here!
Alicia

[Kev-O]

rue2you, on Apr 21 2009, 06:39 PM, said:

Wow, I feel like I don't even know where to start.
First of all, I am paralyzed from my waist down from Progressive MS - not from some kind of accident so medically, I feel like if I had been in an accident, I would have been sent from the hospital to rehab, but because it is from a disease, it has been more of "Oh, this is sad and we are sorry. We will teach your husband how to move your legs so you won't get stiff." I was told that OT was for people that had trouble waist up and that I did not need it. I have since learned from someone I was introduced to through this forum that that is crazy! I am only 32 years old, have 5 children, and am full of life. I want to live my life the best way I can. I have been paralyzed completely (I can move my toes down) for 5 weeks now and everything I have learned is from here and You Tube. Since I have Progressive MS, they have told me that this is permanent. My legs have been awful all year and have gotten worse and then overnight (literally) they were gone. The crazy thing is, is that I feel better now than I have in a year. I was in extreme pain for all of 2008 and I couldn't walk for more than about 15 minutes. Now, that I am paralyzed I have no pain (at least if I do, I don't feel it), and I don't think I realized how much energy it was taking out of me just to get from point A to Point B so I feel like I have energy back. Having said all that, I have questions!
At first, we had to rent a cheap hospital wheelchair. That thing killed my back and my bottom. I have some sensation in my bottom and pubic area if you apply pressure but have no feeling if it is lightly touched. From about my hips down feels completely gone. If you would squeeze my legs very tightly, then I feel a little pressure feeling. So, if I was feeling sore in my bottom, I knew if must be pretty sore.
I have insurance through Medicaid so they said it would take at least 3 months to get a custom wheelchair. They told me to stay out of it unless I just had to transport somewhere. That meant I had to live in my living room chair for at least 3 months - all through spring and in to summer!! No way!! So, I got on Ebay and found me a gently used Invacare A4 for about $300. I was very excited!! The measurements aren't perfect but it is much better than what I had. I got online and read the owner's manual and learned how to adjust a bunch of things to make it fit me better. I had read on here about cambor, center of gravity, foot plates, no arm rests, lower backs, and all such things. This chair has been so much better!!
Having said all that, we are ordering for me through Medicaid an Invacare Top End Crossfire T6A that will be custom to me. I know that Medicaid will only pay for certain options, but I can pay for the other stuff that I want extra through the wheelchair company when they actually order the chair (after Medicaid has approved it). What I want to know is, how do you know what options to pick?
For example:
1. Front tire size
2. Type of tire
3. Type of handrims (mine on this A4 are very slick and I end up pushing with the tire a lot and the palms of my hands are getting very calloused and staying sore.
4. Type of seat cushion
5. Height of back
6. Arm rests or not?
7. Push handles or not? Why would someone not have them?
These are all things that I don't know about!!
Also, I want to drive again!!! I don't have a clue about hand controls and what kind to get. Do you take special classes or do you just practice in an empty parking lot until you get it? Do you have to go and get a different drivers license with new restrictions or keep the same one you already have? Do hand controls stay on a car permanently or will they come off when my hubby drives?
I am sure I have more questions but maybe this is a start!! I should really close this novel!
Thank you all for your help. You have all helped me become more independent just from reading your answers on here!
Alicia

You got a good chair thats what i have.

1. Front tire size- This is what i have Front wheels. They are big enough to not catch on rocks an sent you flying out of your chairs but small enough to where they dont get in the way

2. Type of tire- I always use 24 by 1 high pressure tires like this Tires. They are easy on your hands an make for a good ride.

3. Type of handrims (mine on this A4 are very slick and I end up pushing with the tire a lot and the palms of my hands are getting very calloused and staying sore.- to me the hand rim does not matter to much. The only time i use it is to stop or slow down i never use it to push. Your hands will hurt for a bit but you'll get used to it.

4. Type of seat cushion- I use the air seat cushion that has the air valve to let air out an in. Have not had any skin problems with it.

5. Height of back- Your a low para so a low back would work just fine. My crossfire's back an move up or down so you'll just have to play with it an find what feels best for you.

6. Arm rests or not?- f*@k arm rest they get in the way an are a pain in the ass ditch'em

7. Push handles or not? Why would someone not have them- f*@k push handles to. Just like arm rest they just get in the way. Plus people see them an think its ok to just come up behind you an push. The crossfire has a bar on the back rest to where if anyone needs to pick up the back of the chair they can. Like the arm rest ditch'em!

Menox hand controls are the best "IMO" you can get. your hubby will still be able to drive with them in. Just google them
Hope this helps

This post has been edited by Kev-O: 21 April 2009 - 11:06 PM

[qbounce]

Normally, the wheelchair company sends someone out to evaluate you and order what you need based on your abilities.
Even further, your doctor can issue a referal to a Physical Therapist or a Physiatrist who will help you get exactly what you need.

Get that referal. Also, I waited 6 months for my manual chair, and I was also told it would only take 3 months. My insurance was always holding things back, though. I hear medicaid is actually pretty good about referals. Good luck

Oh, to add . . . try quad rims to push with. They're rubberized and easy to grip, but when going downhill they can cause a burn very easily, so on longer outings I recommend gloves.

[backwoodsrider]

Welcome to the wheelchair world. You have already got some good replies. About all i can add is the Jay Active Jell Cushion words pretty good too. It is the latest evolution of anti sore cusions. Is a little heavy if you have to break the chair down multi times a day getting into a car or something but it does disipate pressure on the skin very well.

You probably read about adjusting the "push" of a wheel chair and of course back angle and spread the rear tires out a couple degrees by adding a washer or two bewteem the bottom of the rear axle plate and the frame.

Handles invite ackward situations unless you have someone who will push you around often.

[twisted_ophelia]

Get a referral to a therapist (an OT) to help you out with choosing chair options, especially seating, and do the measurements for you. Chair measurements are very specific.

As for the Jay Active cushion, I can also recommend Jays. I currently use the Jay Active and have used the J2 for years. Are you doing weight shifts and pressure relief?

I currently have Kenda hybrid knobby tires on my chair (24") but your best bet is probably just to go with an everyday tire. For rims, there are lots of options but I don't know anything about Medicaid (live in Canada) and what will get paid by them. Height of back really depends on what kind of function you have. This is all stuff that really, really, REALLY should be dealt with by a therapist or a rep from the company. If you're going to be spending a lot of time in your chair, it needs to fit you really well and not create any more issues for you. We all can offer advice to you but, ultimately, we don't know you or your body and a qualified professional should be helping you out.

[Hawkeye]

Alicia,

I'm 29+ years post injury, so I have a bit of insight into your questions. My take:

1. Caster size. Larger casters roll over uneven surfaces better then smaller ones, but at some point larger ones will begin to hit your heals and add unneeded weight. Use the largest size you can get away with. I use 6 X 1 1/2" soft roll.

2. Type of tire. High pressure or solid tires roll easier but can give a harsher ride. Wider pneumatic tires give better traction outdoors, especially if you live where it snows, and they give a more comfortable ride. I use everyday 24 X 1 1/8", as they give a good compromise between traction/comfort and easy pushing (if I keep the pressure maxed at 75 psi).

3. Type of hand rims. If you have a weak grip and need projections or vinyl coated handrims, use them. To make slick alloy handrims, which I use, easier to grip, try getting a set mounted in the long tab position. This gives you more room to wrap you hand around the rim for a better grip. Wearing some thin leather gloves can also help. Golf gloves are great.

4. Type of seat cushion. Really impossible to recommend. You need input from a local professional. I use a Roho low profile Quatro select.

5. Height of back. Generally you want the back to come up almost as high as the bottom of you shoulder blades as a starting point. This is a very personal setting, and until you know what yours is, stick with an adjustable height back. I'm 5' 10", sit on/in a 2" cushion, and have my back adjusted to 15".

6. Arm rests or not? If they make you feel more secure and or comfortable, use them. Order you chair with them, they can always be taken off later, or re-added if you change you mind. I use arm rests with built in clothing guards and transfer loops.

7. Push handles or not? If your chair is a rigid frame and there is a cross bar, you don't need them unless you want to be pushed. If your chair does not have a cross bar, or is a folder, get them. They add almost no weight and aren't large enough to realistically get in the way of anything. If the possibility of ever having to be pulled up a set of stairs exists, they are very helpful to the person doing the pulling/lifting. I have them on my custom GTX, and they have never been used, but are there "just in case".

8. Driving. Every state has their own requirements. Check with you local DOT. In general, you will have to take a driving test with a state examiner, just like you did when you got your first driver's license at 16 years old. Yes, there will be a restriction on your license for hand controls, just like there is one if you need eye glasses.

9. Hand controls. A vehicle with permanently mounted or portable hand controls can still be driven by an able bodied driver with the controls in place. In general, permanent controls are more expensive, take longer to install, and are easier/safer to use. I have used the CT-100 hand controls from www.wells-engberg.com in my last 6 vehicles, over the last 20 years. Currently they cost around $750 installed. Most auto companies have programs in place that will cover this cost, if you are buying a new vehicle.

Good Luck...

Joe

[rue2you]

Thank you all so much for all of your answers! You have been very helpful. Now, hopefully, I can figure out what I need. You have helped me make some decisions about it all.
I am trying to figure out what to do about hand controls and car adaptations, see if Medicaid pays for any of these things or if I do. I am really looking forward to driving again!! I miss it very much.

[edlee]

In Pa. we have a department of vocational rehabilitation that will pay for a lot of stuff. It's geared toward getting you back to work,,,, but even if that's not your plan,, they don't need to know that.

Your state probably has a similar program, but you have to look for them,, they won't come looking for you.

Having used both, I prefer the permanent hand controls to the removable ones,,, but being able to use them in any car would be a plus. In my five years chairbound, that last has never been needed.

Twisted O. gave good advice, You will be sitting a lot, now,,, see a pro about the seating issues. As for armrests and push handles,,,, matter of choice,,, I use both.

Be well,
ed

[norma]

Welcome, you have come to the right place for help! These folks know there stuff! I too am new to this and have only been in my chair for about a year, we are slowly becoming friends.
I have slowly taken things off my chair that I was told I needed when ordering. Arm rests were the first as they got into the way when transfering. Tippers are gone and seat belt will be too as soon as
I'm driving which will be soon!!! My tires are solid as I did not want to have to worry about flats. My rims are metal easy for pushing but get REALLY cold outside in the cold.
I wear glove mitts in the cold weather but other than that I don't nned them it is your preference. My seat is an air cushion and I have not had any problems with it or my skin.
My seat back is low but there is a gap between my seat and the back and I would rather a seat that had no space. I do have push handles and use them only when out visiting and have to be bumped up stairs by my hubby. My chair is a quickie ti . I agree it is hard to order a chair when you don't really know what you need/like or/want. It would be good to see an ot or pt and get their opinion.
Wow, 5 kids you are a busy woman!!! I just bought a new car today and can't wait to get back on the road as well. I had to be assessed in rehab and then took lessons and had to start over like I was 16 again.
A real pain in the ass but well worht the effort. Hope this helps a bit, good luck, Norma

[greybeard]

norma, on Apr 25 2009, 11:45 PM, said:

My seat back is low but there is a gap between my seat and the back and I would rather a seat that had no space.

I've seen a number of people complain about this.

Why not get of a piece of material the width of the seat. Fasten the top with adhesive velcro strips to the inside of the seat back. Then velcro the bottom of the flap you have created to the chair seat under the cushion. Gap sealed. No more draughts. No more bum on view!

[twisted_ophelia]

greybeard, on Apr 25 2009, 07:12 PM, said:

norma, on Apr 25 2009, 11:45 PM, said:

My seat back is low but there is a gap between my seat and the back and I would rather a seat that had no space.

I've seen a number of people complain about this.

Why not get of a piece of material the width of the seat. Fasten the top with adhesive velcro strips to the inside of the seat back. Then velcro the bottom of the flap you have created to the chair seat under the cushion. Gap sealed. No more draughts. No more bum on view!

I had this problem with my old chair. Lots of people do. But on my new chair, I have the Corbac backrest and there is no space. The Corbac comes with this long piece of material attached to it that extends down, velcros to your chair seat underneath your cushion and puts an end to the problem of space between cushion and back.

This post has been edited by twisted_ophelia: 26 April 2009 - 03:30 PM

[Hapahowlee]

I believe every State has a Vocational Rehab, but they all differ in what they require from you.

Hubby used them in Missouri to have them pay for his cleaning lady when he lived alone. However, when it came time to buy a van and have hand controls and swivel seat put on, he was on his own.

In Arizona, hubby was already working so the process of getting approved through Voc. Rehab to pay for the van conversion went fast. The van conversion is another very long aggravating story that finally got worked out after 2 years. Seems Mr. Hapa is always the "trail blazer" when it comes to the government having to correct some wrong doings.

I think it would be a good idea to get an evaluation and some input from your doctor regarding your wheelchair. If the government is paying for the chair, they won't pay for another chair for 5 years.

One other thing that Voc Rehab did was to pay the 20% that Medicare didn't cover on hubby's new wheelchair. Our private insurance company doesn't pay for equipment or physical therapy unless you've been in the hospital and it's needed to get out of the hospital.

Good luck!