The dreaded wheelcair

Discuss physical medical devices that can be used to treat or improve MS symptoms

The dreaded wheelcair

Postby cruiserkb » Fri May 25, 2012 9:23 pm

I have searchd and have not found anything on this topic, so I thought that I would give my thoughts on the subject.

First of all don't be afraid to use one. I would follow a few helpfull hints that I can share. If you are able try and keep yourself out of a motorized chair. The proverb " use it or loose it" aplies here. If you can still use your upper body use it. MS has probubly put you in this situation, don't put your self in a position to cause your self to get worse because of your MS.

As far as the chair goes don't let them put you in a heavy hospital chair. This will fatigue you almost as much as atempting to walk. Have your Dr. wright you a script for a custom chair. The standard hospital chair weighs 36 to 45 lbs. I atualy started out in one of these. After a few months ofphone calls and fitings I got a custom chair that weighs 17 lbs. What a diference. I am able to spend more time doing the things I love because I don't have to waist so much energy pushing a heavy chair. There are lots of features that will help cut down on the weight. Removable push handles, ultra light tires and rims can shed alot of weight.

A proporly fit chair will also help. Most hospital chairs are built to fit a wide range of people. I have extremely long legs so the hospital chair was very hard to mauver and to stay in for long periods of time. It affects the back alot bu puting you in a bad sitting position and in the wrong position during the push stroke. I noticed that my sholders and back felt better in the new chair and I was able to spend 8 + hours with out any major discomfort.

A good seat cushion is the most overlooked piece of a chair that should be adressed. The standard cushons tend to have poor quality pading. I am using a cushon that has an air bladder in it. When I first sit down I open a valve that lets some air out. This causes the pad to conform to me and decrease the risk of pressure sores. I can keep it set for a week. I just open it up 1 night a week to reinflate and start over in the morning.

In order to get most of the items covered you will need a letter of medical necesity from your Dr. In the end I ended up with the exact chair I needed with no out of pocket cost to me. Good because when all was said and done the chair cost about $4000.00 usd.

Lastly do some research into different chairs. This is helpfull when they come and do a fitting. The more you know the better you will feel throught the hole process.

I hope I took some of your fears out of posibly using a wheelchair.
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Re: The dreaded wheelcair

Postby MScrusade » Fri May 25, 2012 11:24 pm

I'm lucky in scotland we have a free national health service and the physio who prescribed me with my chair was brilliant, it was narrower than the hospital chairs and a lot lighter, im lucky i haven't needed it since about 2 months into my tysabiri treatment, but i'm not looking to the horizon just yet, if i do use my wheelchair again which will of course be innevitable, i'll take into consideration what you've said cruiser ( i just got the name!)
so my first question would be are there specialist stores which sell the air bladder cushions, and secondly how do you find being immobile has hindered your day to day life, because imm quite scared to be entirely honest.
as for my only piece of advice, when in a wheelchair it can be quite a stress on your hands, i for one noticed blisters when using my custom chair and the hospital one, so if you visit a local sports store you can buy weightlifting gloves, without fingers and backs on them especially it gets too warm sweaty hands can cause breaks in the skin. and if you can get gloves with grips for some kind of traction it really helps a lot, takes some stress off your arms aswell especially on nthe dreaded up hill push.
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Re: The dreaded wheelcair

Postby cruiserkb » Sat May 26, 2012 8:47 am

MScrusade, thanks for your insight.

As to the question of the pad I know that they can be purchased on the internet. I don't have the name of the one I use rite off hand. I remove the labels because I wear shorts alot due to the fact that it gets above 115 deg. F. here. The labels can sometimes rub on the skin. I save the labels so I can get it for you later. I also use the same brand back for my chair.

As to the blister issue, I ran into this earlier on. I use glove just for the fact that the push rings tend to get HOT. My first chair had the standard round rings. I found this somewhat dificult to use on days that my hands did not work so well. I curently am using set of Naturalfit rings. The shape of these is more rectangular so the grip surface if larger. There are two sizes and I am using the smaller XT version just to cut down on weight. Because of the shape of the rings it reduces the likelyhood of carpeltunnel developing in the hands and is a better fit in the paln. They also have a thumb channel that goes between the ring and rim. This alows for the use of the thumb in the push stroke. All of this leads to fewer hand problems from pushing, now if I could stop smashing them into doreways and other obticals that would be AWESOME.

I have made the transition to the chair fine. It is alot of work at the begining. First off is developing the upper body to be able to do the functions of the legs. I spent a week in a rehab center getting the basics down. The most dificult is transfering from the chair to something else. They make a large aray of transfer boards that slide on like a bridge to acomplis this. I started using this method at first. Once I built up my upper body I now no longer need the board. I can do what is refered to as a "POP" transfer. I pick up the full weight of my body with just my arms and move myself. The hardest lift I do daily is in and out of the car. I lift about 18" up and 20" over. I try not to get in and out of the can to many times in a day but I can now easly do 15 to 20 if needed. I also carry a transfer board in the car just in case. I find that I have to think things trough more. If I encounter an obstical I have to stop and see how to nogotiate it. The absolute hardest thing I have done is to get on a carosell horse. I acomplished this by simply rope climbing the pole. I wanted to prove to my childeren that if someone wants to accomplish something they can achieve it with some hard work.

I would recomend that you seek a physical therapist during the build up. I had 2, one that worked with the core upper body and abs and another that worked with the hands and forearms. I still go to therapy every week to strech and build my core. They can also help with the eleviating some of the pain that you will find you have on a daily basis due to the fact that you are using your body in this way.

I hope this helps with some of the fears that you may have. I started this journey at age 38 and I will be turning 40 this year. If I can do it I beleive that most anyone else can.
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Re: The dreaded wheelcair

Postby MScrusade » Sat May 26, 2012 11:43 am

thank you very much cruiser i'll definetaly be taking your advice on board, will speak to my OT about getting the air bladder and square rims would make life so much easier because when i do take a bad turn i loose all power in my arms and hands so i have special cutlery so that'll be a great help means i can get around much more freely,
Thats fantastic you lead a pretty normal life it's seriously insperational, makes the thought of being in my chair again bearable. i guess i was just scared because i am only 20 so the thought of possibly being in a chair for the forseeable future is dreadful, but if the tysabari keeps working the way it should i hope i can stay as healthy as i am, but like i said it makes the thought of the future, and if im going on holiday we walk alot in towns and stuff so a comfortable chair will be a Godsend
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Re: The dreaded wheelcair

Postby cruiserkb » Sun May 27, 2012 8:53 am

I looked up the seat pad that I am using. Here is the website:

http://www.varilite.com/products_detail.aspx?prodID=5

I am also using their seat back as well. I use a small back so I can utilize my upper body more. It is less restrictive while turning your upper body to reach for things. Here is the back:

http://www.varilite.com/products_detail.aspx?prodID=37

Hope this helps.

Have you ever thought about looking into quadnobs? Ther are nobs that atach to the ring that alow you to push just utilising the heel of your palm. Could be usefull on days when the hands don't want to funtion as well as they should.
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Re: The dreaded wheelcair

Postby MScrusade » Sun May 27, 2012 2:21 pm

cruiserkb wrote:Have you ever thought about looking into quadnobs? Ther are nobs that atach to the ring that alow you to push just utilising the heel of your palm. Could be usefull on days when the hands don't want to funtion as well as they should.

never heard of them i think i'll be investing because i dont want to vegitate on my really bad days, as for the web links thanks a lot! i'll be investing in those, or i'll see my ot to see if i can get them prescribed :)
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Re: The dreaded wheelcair

Postby Tmerrell » Sun May 27, 2012 7:44 pm

This is all great information but some of us have no choice but to go with a power chair. I was in a situation where I was at the point of loosing my job if I did not return. I run a Head Start facility that has 17 classrooms. 320 children and a staff of 40. I had a choice, go back in a power chair ( my left arm is too numb and weak to use conventional chair) or stay on long term disability til 65. I went back and my fears were dismissed by the acceptance I to from the kids. Do not be afraid of power.
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Re: The dreaded wheelcair

Postby cruiserkb » Sun May 27, 2012 8:11 pm

I am not discreaditing the use of power chairs. I am sure if I find myself at that point I will do as much reaserch as I have done for a manual chair. I have just seen some of the affects that a power chair can do. Some Dr's are quick to put someone in a power chair when a manual will work for a while. Weight gain has to be the bigest issue that I have seen with power chairs. I am of the opinion that it might be more dificult to come out of a power chair than a manual one after extensive time in them. I have seen some people give up on staying active and healthy since a power chair takes so little effort to operate.

The main thing is which will give you the best quality of life. :-D
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Re: The dreaded wheelcair

Postby Tmerrell » Mon May 28, 2012 4:58 am

For me quality of life has improved greatly with the power chair. My energy stays high enough to work and not just collapse when I get home. Don't get me wrong I get out of the chair every chance I get. If I only need to cover short distances I walk with a cane. I often cover 5 or more miles going from classroom to classroom and checking the 3 playgrounds we have. I used to relish in that because I never gained weight. I am not aging now in fact I have lost 10 lbs since starting use of the chair. I thank my doc because I can probably work for several more years now.
We all need to do what we can to achieve the best quality of life we can, this works well for me at least.
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Re: The dreaded wheelcair

Postby cruiserkb » Wed May 30, 2012 2:37 pm

Tmerrell wrote:For me quality of life has improved greatly with the power chair. My energy stays high enough to work and not just collapse when I get home. Don't get me wrong I get out of the chair every chance I get. If I only need to cover short distances I walk with a cane. I often cover 5 or more miles going from classroom to classroom and checking the 3 playgrounds we have. I used to relish in that because I never gained weight. I am not aging now in fact I have lost 10 lbs since starting use of the chair. I thank my doc because I can probably work for several more years now.
We all need to do what we can to achieve the best quality of life we can, this works well for me at least.



I am glad to hear that you have found a way to to keep active in your comunity. I think we all strugle to find a happy medium with this. I think it is great that you get out of the chair whenever you can. I do the same thing. I hate waking up knowing I will be in the same chair for the entire day. I transfer to the sofa or my favorite wing chair when ever posible. Even when I go out I try to get out of the chair. I get up on bar stools and most chairs without to much effort. Booths are a little more chalenging.

Thanks again for you insight.
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