January 18, 2007 but more information and updates coming soonThis is part of the Brejcha Personal and Disability Resource Site, and after reading this page there are links at the bottom for my menu and back to the intro page. But for now, Welcome to:
January 18, 2007 but more information and updates coming soon
In this part, I want to address a pair of problems that are separate but related: spasticity and tendon contraction. These are both major considerations for many individuals who are dependent on wheelchairs.
NOTE: January 18, 2007. I am worse now than when this page was written, and need help getting in and out of bed and on and off the wheeled shower chair I shower in, but I am leaving the artjicle as it was until/ I have time to do an up-to date rewrite. BUT: I have discovered an un-anticipated benefit oif my regular standing regime at least every other day for 45 minutes or so. I am also diabetic, and in addition to the impaired leg blood circulation resulting from wheelchair 'restriction' 2/3 of my life, diabetis also affects my feet and lower legs. I have seen diabetic feet go black and get severely damaged from lak of blood flow - BUT my feet, while cold and in need of lotioning bec ause they get dry, are quite healthy because I stand regularly!
Now to continue:
I have M.S., and I am paralyzed from the waist down and strongly spastic, along with having sundry other problems. The spasticity is particularly of concern as I live alone and have to handle the daily tasks of getting dressed, transferring on and off the toilet (no longer possible; my attendants do my bowel program in bed) and shower transfer-bench (with some help I still manage this), and even sleeping reasonably well.
Driving is another, even more critical, concern. At fifty-five (er... ideally) miles an hour, the last thing I need is to go into a strong flexor or extensor spasm where I can't keep control of my van.
My spasticity is kept pretty much under control by regular doses of Baclofen, or Lioresal, depending on whether you know it by the generic or trademark name. This antispasmodic medication is fortunately very well metabolized and only does what it is supposed to do. I am only taking 20 milligrams four times a day, as this reduces the spasticity to manageable levels. Higher doses may be safe, but I prefer not to go this route because then it can be somewhat sedating and have depressing central nervous system effects. Not what I need! My full-time job as a hospital phone operator on the overnight shift requires me to be fully alert to properly dispatch teams for cardiac and respiratory arrests, traumas and other emergencies for two hospitals, as well as dealing with a couple of hundred doctors' offices when emergency calls come in. And in between these calls, I have my laptop computer with me and I work on my sideline career as a writer.
I did increase my meds slightly from three times a day to four times a day, simply to keep the blood level more consistent. This helped a little without any effect on my alertness. I had tried a little more, but that seemed to make me more sleepy in the long hours of the night, so I cut back to the 20 mg Q.I.D. level. That is enough now because the remaining spasticity is not the problem, but rather, the way it was aggravated by my tendon contraction.
Needless to say, sitting in the chair sixteen to eighteen hours a day since 1986 has not been conducive to being nicely stretched out and limber. Occasional physical therapy did help early on, but the insurance structure is such that coverage only holds as long as discrete improvement is measurable -- impossible in my case. Maintenance is not paid for even if, in the long run, it would be more sensible. Not only that, but my body is so good at fighting back with spasticity that therapists have a hard time dealing with me. Even with physical therapy, the amount of stretching that could be done by one therapist, also taking care of another patient or two, was minimal. One of my attendants does do some range of motion exercises, but that is not enough.
For years now, when I go to bed, I have to strap my legs together. I use a wide velcro strap first that is designed for leg bag use and wrap it around both legs just above the knee, and then -- since the velcro is just ripped open by my leg spasms -- I use the belt to a robe to tie my legs together (the wide velcro strap is for cushioning). My feet are protected by fleece-lined boots tov prevent heel sores, and tied together with another strap. It's a lot of work, but if I don't do this, I'm awakened every forty-five minutes by major flexor spasms that tie me up in a pretzel or leave me with a leg hanging off the bed. Fortunately, one leg or the other usually is more spastic, and when I sleep in bondage, the calmer one keeps the spastic one down and I've learned to sleep through one leg's attempt to get loose.
But, even with my legs tied together, I periodically used to wake up from a spasm that is so strong that I would literally bridge and lift my rear off the bed -- potentially putting me at risk for falling to the floor. It makes me wish I could control that strength! One time I ripped a cabinet door off its hinges with my foot when my leg went into a spasm from the stimulus of an ice-cube dropping onto my naked thigh. My foot didn't appreciate that -- it needed some quick bandaging. Another time, I kicked my ex-girlfriend off the bed from an ill-timed extensor spasm. Fortunately she has a good sense of humor.
The problem is of course, that my body wants to get back into that sitting position when I lie down, and sometimes it rebels against lying straight. And, aside from the fact that it would compound the problem, sleeping curled up on my side is no answer either. It is uncomfortable and only works to the left side as the tube from my external catheter hangs off to the right (my wife is to my left).. And sleeping on my side doesn't always help as I still get flexor or extensor spasm when I do (and as my bowel program is done in this position, I stay out of it otherwise [unless... well, never mind :grin:).
Well, enter a solution. I still need to tie my legs together when I sleep and I still wake up occasionally from spasms, but it is nowhere near as much of a problem since I started using something called a standing frame or standing table.
I've been using one of my own since the late eighties, though my insurance company turned the $1,400 claim down as they stated a a standing table was a convenience, not a medical necessity (I queried them before ordering the unit). This rejection came despite a letter to the contrary and a prescription from the doctor at the rehabilitation hospital where I was getting physical therapy at the time. But, to hedge my bets, I had also approached the local office of Pennsylvania's Occupational and Vocational Rehabilitation to see about getting their help if I lost my fight with Major Medical. Since I did, I was consequently provided with the frame through an O.V.R. bid. My argument to them -- which they fortunately agreed with -- was that without use of a standing frame, I would have a difficult time continuing to work.
The reason for this is, of course, the dangerous spasticity while driving that I mentioned, and the way my sleep is continually interrupted, thus making me less alert and capable of doing a critical job where patients' lives literally depend on my rapid and accurate response every night.
As I've stated elsewhere, I am an excellent rationalizer. But in this case, it was a constructive use of my 'talent'.
But, let me explain how the standing table helps mitigate these problems. I'll begin with describing how my own standing frame works, though there are different kinds, and even standing wheelchairs (see References at the end).
I use the Econostand from Stand Aid of Iowa, Inc., and the way it works is that I roll up to it in my wheelchair (power or manual) and strap my feet onto a floor plate. Then I move forward a bit more and my knees are held in place by padded slots. I lock the chair and tilt back the arm rests and then drop two lift arms on the Stand Aid. Then my attendant places a wide canvas sling under my rear hooked onto the ends of the lift arms. Then I crank a long handle on the side and a hydraulic mechanism activates the lift arms to slowly raise me up to a standing position where there is a table positioned at chest height.
Exhilarating the first time -- let me tell you! But let me add a touch of caution. First, consult with your doctor to be sure there are no contraindications to use of a standing frame. Next, it is essential to be supervised at first, especially if you have not been standing for some time you may be victim to something known as orthostatic hypotension -- which in plain English means you may pass out! The reason for this has to due with the disturbance of the fluid balance in the body when a radically new position is imposed. The way to deal with this is to introduce the new positioning gradually under supervision to give the body time to adjust.
But, once I am standing, I close an optional safety gate behind me that locks me into place. There are various sizes of velcro-mounted cushions for it to accommodate various... posterior anatomies. With my feet and knees locked in place, along with the rest of me, I am now getting some of the very stretching my physical therapist was fighting desperately to give me for my heel cords, hamstrings and quadriceps. A little uncomfortable at first, but strangely enough, it also feels good.
The benefits of this -- and more importantly the stretching combined with weight-bearing -- are many. Muscle stretching, constipation relief, osteoporosis reduction, pressure sore relief -- all these are gained by regular standing.
And now to something more -- and this should not be tried without supervision (and this is my one complaint with the Stand Aid design because there ought to be an easy way to do this). I wanted more hamstring and more heel cord stretching. The table's position kept me from bending forward, but in examining the setup, I realized that with the safety gate in place, I had the perfect solution. I could not drop the table because the lift arms were in the way. But the lift arms are unnecessary with the safety gate locked and holding me up, since my knees and feet are kept in place. So what I did was to release and drop the lift arms back as far back as they could go, and then my attendant can release the adjustable height table, which can be dropped down to waist height.
One thing my therapists were trying their best to do was to get my legs in a straight leg raise where my leg is perpendicular to my body, for ham string stretching, and also to get my feet perpendicular to my legs while the legs were straight, for heel-cord stretching -- HARD WORK!. Well, with the table down at my waist and my legs locked straight I can bend forward at a ninety degree angle and force just what the therapists were trying to do. Ouch, at first! (Note: I was able to do this adjustment by myself a few years ago [despite my own caution against it], but due to some progression of my M.S., no more. Now I have to see about getting some help occasionally to try this again unless I gain back enough strength from using the new exercize machine I bought [see "Keeping Physically Fit: Working the upper body""].
But what all this does is to stretch me out even more effectively than a therapist can do -- and I can do it at home by myself on a regular basis, instead of just erratically with an overworked therapist. Some supplemental therapy might be nice if I can afford it, but this setup does wonders! For one, I am sleeping better because my body isn't constantly trying to curl up on me. And, since my body is more stretched out, even if a spasm hits me while driving, it's minor and not a problem at all.
But the benefits of a standing frame go beyond this. Another, and major, benefit is what it can do for trunk strengthening and balance training, especially with the table dropped.
Getting into that ninety-degree bend means bending perpendicular at the waist. You may have to start by using your hands to lower yourself into the bent position and then to push yourself back up to a full upright position, but the goal is to gradually use less and less arm assistance until you can do it completely unaided (like sit-ups). Before the M.S. progressed, I got to a point that I was sometimes able to do as many as four or five repetitions down and back up, all without any use of the hands.
Ironically, my spasticity turned out to be useful here. My body, in reacting to the unfamiliar and intensive stretching would go into an extensor spasm which helped me stand up after bending. And sometimes into flexor spasms which were less pleasant, but being locked in as I was, it was no danger. But while this reverse version of a situp does marvels for your abdominals, there is more.
When doing the standups, when you straighten up, keep bending backwards as far as possible to help to stretch the upper thigh muscles or quadriceps. Another way to do the latter also is to lie on your stomach and then do a semi-push-up to arch your back. I suggest doing that on a regular basis also. But while on the frame, after the backward stretch, come back to a neutral, straight up position and start doing slow rolls with your body. Use your hands for partial support at first, if necessary, but bend from side to side and then start a slow circular motion with your upper body. As you gradually strengthen, go further and further from the upright with less and less help from your hands.
I had originally been doing this at times in my wheelchair, but I never felt terribly secure and didn't keep it up. But in the standing frame it is easy and I am held so firmly in place that even if I lose my balance I can't go anywhere and I can get myself back up with my hands.
The benefits I derived from this trunk and balance training were most obvious when driving. Sharp turns were no longer as uncomfortable and I was in better control of my van. Not that I was ever unsafe -- and I am not now -- but I was straining to keep balanced and comfortably in control on sharp turns or on winding roads. Now, I also use the new machine for trunk training, and still do what I can on the Stand Aid, and I have retained my driving benefits -- except on very hot days.
I have lost some of these gains, but I hate to think where I'd be without the standing frame!
Finally, I want to close with some cautions to dropping the table and lift arms. You can't fall out of the frame, but releasing and dropping the table -- and then getting it back up again -- is tricky, and be sure to have help!
I would recommend starting slowly, depending on how long it has been since you were standing. Also, always do it with a spotter. Someone who has not been standing for a long time sometimes experiences vertigo when first standing again. Also, start with ten or fifteen minute sessions at first and gradually build up. You are putting stress on joints that have not been weight bearing as long as you have been in the chair, and it's important not to overdo it and overly stress them.
Also, when doing the stretching, hard fast movements are out. And if bending, when going into the bend, take it easy and don't try to go all the way immediately. Let yourself down slowly, relax, breathe, hold yourself at a point where you can feel the stretching, but before it becomes overly painful, and let yourself stretch slowly. After a while, up and to the backwards and lateral stretches and balance exercises, and then forward again. The point is simply not to rush things. Your body needs time to adjust to the new pressures you are putting on it. But the benefits are very real and substantial. Good luck!
RESOURCES:
Standing tables
Altimate Medical, Inc. P.O. Box 180, 262 W. 1st Street, Morton, MN 56270, 800-342-8968, 507-697-6393, web site: http://www.easystand.com. Makers of the Easy-Stand, Ovation Strap Stand standing tables and other products.
Handiflex Corporation, New address and web site Handiflex Corporation 3343 West Davie Blvd. B108 Fort Lauderdale, Florida 33312 Phone: 954.791.6251 Fax: 954.797.1668. Website: http://remote-ability.com/exercise/handiflex.com. Makers of the Handiflex exercise machine designed for those with spinal cord injuries and related traumas. Technically this is an exercise machine, but I list it here also because it combines an exercise machine with a standing frame since it is designed to allow exercising in both prone and vertical positions.
Prime Engineering: New address: 4202 W Sierra Madre Ave., Fresno CA 93722, Tel: 1-800-827-8263 Web site: http://www.primeengineering.com. Makers of pediatric and adult standing tables.
Rand-Scot, 401 Linden Center Drive, Fort Collins, CO 80524, 800-467-7967, 970-484-7967, FAX 970-484-3800, Web site: http://www.randscot.com. Makers of the Personal Folding Stander as well as a wide range of other products.
Stand Aid of Iowa, Inc.: P.O. Box 386, Sheldon, IA 51201, 800-831-8580, e-mail: standaid@rconnect.com, web site: http://www.stand-aid.com. Makers of the Econostand and other standing tables that lift the occupant from wheelchair to standing position.
Stand-N-Go is a manually operated mobile standing frame. See http://members.aol.com/scsweb/private/stdgo.htm
Standing Wheelchairs:
Balder(6/1/03: seems to have disappeared, will search): Balder USA, 580 TC Jester, Houston, TX 77007, 713-864-1460, e-mail: tpoulson@balderusa.com, web site: http://www.balderusa.com. I need to check further, as this chair while advertising a standing mode, doesn't quite seem to stand fully, though it lifts and reclines.
Innovative Products, Inc., 830 South 48th Street, Grand Forks, North Dakota 58201 USA, 1-800-950-5185, E-mail: jsteinke@iphope.com , Web site: http://www.iphope.com. This company believes standing is not only for adults, but also children with disabilities.
Levo: Levo USA, Inc., P.O. Box 3869, Peachtree City, GA 30269, 888-LEVO-USA, 770-486-0033, FAX: 770-486-6096, E-Mail: jamespapac@msn.com, Parent company web site: http://www.levo.ch. This info is for the American distributor for a Swiss company manufacturing customizable manual and power-operated standing wheelchairs . The website has a page with information on the distributors in a wide range of countries.
Lifestand: Independence Providers, Inc., 29A Marble Ave., Pleasantville, NY 10570, 800-782-6324, 914-741-0354, e-mail: standusa@aol.com, web site: http://www.lifestandusa.com. Makers of the Life Stand standing manual and motorized wheelchair
Permobil, 6-B Gill Street, Woburn, MA 01801, 888-737-6624, 617-932-9009, e-mail: permobil@aol.com. web site: http://www.permobilusa.com. (new URL) Makers of the Power Mobility System and the Chairman Stander, a multi-function front-wheel drive power chair that combines standing, seated and reclining positions as well as environmental and communication control.
Redman Standing Chairs, 4790 N. Keet Seel Trail, Tuczon, AZ 85749, 800-727-6684, 520-760-3206, web site: www.redmanpowerchair.com (new URL) Makers of a power wheelchair that also combines standing, seated, and reclining positions.
Rover PS Stand-Up Wheelchair is a rear-wheel drive unit distributed by Theradyne Healthcare Products Click on "Products" on the menu on the left, and under "Adult Rehab", click on "Power wheelchairs", and then on "More Info' under the "Rover PS"., 395 Ervin Industrial Drive, Jordan, MN 55352. Phone: 800-328-4014 and 612-502-9190.
Stand-N-Go is a manually operated mobile standing frame. See http://members.aol.com/scsweb/private/stdgo.htm, Stand-N-Go, Rt 5, Box 22A, Fergus Falls, MN 56537
The Super Stand from The Standing Company is a manually operated standing wheelchair. 1916 S. Niagara Saginaw, Michigan 48602 Phone: 1-800-STANDING (1-800-782-6346) Fax: 989-497-8738
Vertran chairs, from Vertran.com VERTRAN/FENA Design, Inc. 12925 16th Avenue North Plymouth, MN 55441-4560, Office: 763-553-7878 Toll Free: 866-740-FENA Fax: 763-553-7882
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© 1997
Information provided at this web site is of a general nature and is not intended to take the place of a physician's advice. It is vital that persons diagnosed with, or suspected of having, any disability or medical condition consult with their physician or with the appropriate division at a major teaching hospital, to assure proper evaluation, treatment, and interpretation of information contained on this site.
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