[Notwheels]

Is anybody else out there a "Walking Quad?"

I'd like to talk to other people who are technically Quads, but who do not require the use of a wheelchair all the time, see what kind of medical problems, levels of pain etc. you have compared to my own. I read that there are more and more Walking Quads, but I don't see them on forums like this.

Notwheels

[gazrobsuk]

Yep, I'm one so all details on my web in my signature.

My biggest problem is chronic pain so I take painkillers etc. I generally don't use a wheelchair unless I have a long distance, so my daily life (I work from home full time) is I walk around in the house without a stick even but outside I use one stick. At lunchtimes I go for a walk around the village so 0.5 - 0.75 of a mile for my exercise routine but it aint easy but I will myself to do it more or less every day.

If I have to go anywhere e.g. socially or to the office then I don't take a wheelchair as I know it's within my 'range' but if I go to the pub then my mate always pushes me back (way too fast which is scary) as I can't really walk in the dark as I tend to have to look down at my feet to tell them what to do due to lack of feeling etc but also my balance isn't great when sober so after a few 'scoops' there is no way I could walk home though it's within daylight/sober range:-)

L8er

Gaz

Notwheels, on Jun 4 2008, 04:59 AM, said:

Is anybody else out there a "Walking Quad?"

I'd like to talk to other people who are technically Quads, but who do not require the use of a wheelchair all the time, see what kind of medical problems, levels of pain etc. you have compared to my own. I read that there are more and more Walking Quads, but I don't see them on forums like this.

Notwheels

[City Girl]

Notwheels, on Jun 4 2008, 12:59 AM, said:

Is anybody else out there a "Walking Quad?"

I'd like to talk to other people who are technically Quads, but who do not require the use of a wheelchair all the time, see what kind of medical problems, levels of pain etc. you have compared to my own. I read that there are more and more Walking Quads, but I don't see them on forums like this.

Notwheels

When I was in rehab (Lyndhurst Centre, Toronto, Canada) there were about 50 residents at the time and I saw 4 quads leave with walkers. I am a T12 and left in my wheelchair. I would note that all of them were young (in their 20's).

I do phsyio at a clinic where there is a young woman in her 30's who is a C6 and walks without a cane but has a mild limp (left leg). She cannot run, however. She is 2 1/2 years post-SCI. I am always rooting for her. She is just learning to walk in high heels. I'm hoping to get there too. I know she doesn't have any pain because I asked. She still caths. I asked that too.

Good luck. Nothing is impossible!

I've seen good things from Project Walk.

[jane]

Hi, I am the same as Gaz, loads of pain, but walk short distances and use my chair for long ones - or when i am having a really bad day

jane

[cate]

Explain to me please. walking quad. My daughter is c5/c6, can walk with crutches and still is able to work. She cannot walk great distance but also has knee problems different accident. Has BSS and lymphodeema, but is not a quad, as far as I know. now I am a bit confused
Cate

[gazrobsuk]

Well if you know the difference between a quad & a para & further more complete vs. incomplete then it's clear. If your daughter is a genuine C5-C6 then she technically has 4 limbs possibly affected. Myself I'm 'semi paralysed' (and incorrect feeling too) from the neck down, my right side is my weakest & isn't great especially my hand whereas my left is my best & hence I do virtually everything with my left hand but I can walk albeit with difficulty.

Others more knowledgeable than me can no doubt articultate this better but that's roughly it

cate, on Jun 10 2008, 10:54 PM, said:

Explain to me please. walking quad. My daughter is c5/c6, can walk with crutches and still is able to work. She cannot walk great distance but also has knee problems different accident. Has BSS and lymphodeema, but is not a quad, as far as I know. now I am a bit confused
Cate

[athaldo]

Hi everyone-newbie here! I am a "walking quad" with a c5-6 incomplete tetraplegia. My injury was in 2003 with a broken neck.I use crutches to go to corner store two blocks down ,neighbors and such while using my manual wherelchair to shop longer distances putting groceries behind my chair. It took alot to get to my progression( walking , doing everything by myself ) but it was part of my personal rehab. Leaving Rehab to go home and lift boiling pots was a "fun" challenge!Heck I hasd to eat to at least get my weight and strenght back!- I was quite athletic then. I had to learn the whys and hows to walk and relearn everything else while attainung will power or just give up! The latter was NOT an option. While I was giong to the hospital to see my neck specialist to see if I was ready to get my halo off, I "ran" into this guy asking my my level of injury.Thinking he was only asking about what happened to my neck, I began to tell him when he stopped me to sask my particulars(ASIA , C level,etc.) Well I thought he was just a smart alecand I was thinking of telling this guy off,telling myself:" What the hell does HE know!?!"--But , in fact, yep, he was a walking quad!!! I was just amazed! Walking,talking,looking like nothing happened . He continued to tell me that he had the same(somewhat)level of injury. To this day, this stranger,my hero, is STILL my inspiration to never give up-at least look good trying !Never met up with him again,but while professionals not having much hope for me-I HAD and still HAVE thanks in part to my hope on two legs. I glad I didn't tell him off then(I was in no shape to be very frendly to able-bodies) So, there you go...my story in short. I found this forum googling "walking quads" to find how many of us there are in general.I wish to mention that my left side was or is, hard to exercise as easily as my right(fortunately right handed)but I work hard and it is looking pretty good-ya...hard work is key! I'll post soon and check you guys 's notes later everyone

[cate]

Thanks Gaz for that. never explained to her, she has difficult with all limbs, plus pain, they operated on c 5 &6 inserted rods, bone grafted from hip, the whole right side moves very slowly and jerks, she can use both hands to do things, although she has a lot of spasms in the right hand, it seems that she had the injury for some years before it was discovered, So the nerves were never able to regenerate, Just hope she maintains as she is.
Once she had a scan they took her in within 2 days said was urgent, was treated at Stanmore, about 8/9 years ago. I like a lot of people assumed quad meant that you were in a chair at all times.
cate

[hurbshankin]

To those "walking quads", what specific exercises did you do. I'm C5/6 quad, lots of spasms and tone. I workout regularly. Six days a week. Three days a week I do PT & OT, to include, ROM, Either standing frame or gait trainer - 45 mins, then Matt table work, propped on elbows, or quadraped, weight bearing on arms, reverse crunches, long & short sitting, other strength building exercices, Total Gym - squats, pullups, trunk twists. Arm workouts to include curls, lat pulldowns, tricep extensions, incline press, chest press, PNF exercises, putty work on fingers, hand helper, etc... The other three days i pedal a RT300 FES cycle for an hour and go about 12 miles, good for cardio.
Even though my legs are strong, so strong that is near impossible to break the tone in them at times. I just have no control. I do have sensation in most of my legs, more numb on quads and hips.

How did you Walking Quads get to the point of actually moving your legs.

I spent a week with my trainer at Project Walk and learned a lot there.

any suggestions would be great. Oh yeah, I'm a year post injury.

Hurb

[mntnrain80c]

"walking quad" was a new one on me...my neuro calls me a functioning quad...lol.... which basically means I have damage to my c-spine 4-7 and I can move my arms & legs now but the mobility isn't "normal" and the feelings or sensations are definately far from normal.
I have constant pain, my arms & legs feel like a combination of someone pouring cold water on them and burning ( feels like I have a bad sunburn and then at same time like someone is doing the indian rope burn thing to all of my skin) I have the banding/girdling around my ribs I also feel like I have gloves on my hands. I get spasms in my whole body at times which can lead to funny looks from those who don't know my situation. I myself have a great sense of humor about most of this I told my daughter I always wanted to gyrate around like a hula doll on a dash board or once when I stumbled and after much arm flailing I looked her in the eye and said..."Danger Will Robinson, Danger!" which changed her look of horror to a laugh.
I had absolutely no movement from my neck down for about the first 48 hrs of onset of TM, then gradually was able to move arms and legs but had no idea where they were in relation to the rest of me. I spent a month in a physical rehab unit and was able to come home with a walker and still had a cath in place. After 4 more weeks with the cath in the doc took it out and then filled my bladder he then had me try to relieve myself which I am glad to say I did so he left that nasty thing out...lol I still have bowel issues. I take 2 laxative pills a day and also miralax at night I also have to eat tons of bran, fruits & veggies or they don't move for days. Luckily right now I can "sense" when I have to get to the bathroom (okay most of the time I can...lol)

[WilliamLX]

Well I am not a Quad, my injury is at L2. I can walk, mostly without a stick, if I am tired I do need a stick. I have a fair level of pain which I was taking tramadol for but recently due to having to travel to a country in which Tramadol is illegal, I came of it. In comparison with most on here my injury is minor, it effects only my left leg, in which I do not have feeling, but I do have motor function. Initially I thought I had gotten away with no neural damage. Briefly the feeling came back to my leg but later I lost the feeling again. I am trying hard to live pretty much the same as I did before the accident. Walking or even the pain is not my biggest issue, sex is as I also have incomplete sensation in my genitals .

[Boyd]

This is my first time on this board. On December 20, 2007 my husband fell 12 feet and landed head first on concrete. He has a C2-C3 incomplete injury. He is walking with a very stiff walk. He wears a pedometer and this week he has walked about 1800 steps a day. He does not use any equipment to walk mainly because he has a huge amount of damage to his arms and hands and it makes holding anything extremely difficult for him. We have been told he has central cord syndrome. He is very fortunate in that he has no pain at all. He also only has spasms early in the morning as he is waking up and as soon as he gets up they stop. New this week is that he is now about to empty his bladder without being cathed. He also had his first bowel movement without the aid of a suppository. We are both very excited about this. Right now is that it is almost impossible for him to move his arms at the shoulder against gravity. His figures also curl up any time he tries to use them. We are hoping with it just being 6 months that he will continue to make great progress.

[eyelookok2blindgurls]

I was a walking quad after my first two accidents , the third one put me on wheels though (damn will I never learn ) c7/8 incomplete (officially c6/7/8 but c7/8 functional )

[robbo100bike]

Walking quad as wel as also!!! Or tetra as we get called in UK.

I am 10years posty accident. Got a blod clot on c2-c5 whilst doing Karate resulted in total paralusis initially before the usual rehab, learning to walk again.

These days i use 2 walking sticks day to day. Furniture walk indoors amd use a lightweight self propelled chair for distance, shopping, hols, nights out etc

My left side is affected worst, my L hand still feels mechanical and left foot has severe foot drop which has caused my left achilles heal to end up knacked and is constanstly painful. But dont take anything cos im well hard!!! (Not true) Sometimes take diazapan to deal with unwanted tension / spasm and occasional ibuprofen. Some quads i know swear that lying on the belly every moring stretches the key muscles and reduces the spasm. I find that being active is best medicine and swimming helps reduce what spasm i had and dont generally notice it these days. My main hobby is handcycling which replaces the loss of ability to go walking or running.

This post has been edited by robbo100bike: 24 June 2008 - 12:11 PM

[jane]

robbo100bike, on Jun 24 2008, 01:10 PM, said:

Walking quad as wel as also!!! Or tetra as we get called in UK.

I am 10years posty accident. Got a blod clot on c2-c5 whilst doing Karate resulted in total paralusis initially before the usual rehab, learning to walk again.

These days i use 2 walking sticks day to day. Furniture walk indoors amd use a lightweight self propelled chair for distance, shopping, hols, nights out etc

My left side is affected worst, my L hand still feels mechanical and left foot has severe foot drop which has caused my left achilles heal to end up knacked and is constanstly painful. But dont take anything cos im well hard!!! (Not true) Sometimes take diazapan to deal with unwanted tension / spasm and occasional ibuprofen. Some quads i know swear that lying on the belly every moring stretches the key muscles and reduces the spasm. I find that being active is best medicine and swimming helps reduce what spasm i had and dont generally notice it these days. My main hobby is handcycling which replaces the loss of ability to go walking or running.

Just like me

where do you live?

I have the option of my lateral ligaments being shortend to bring my foot into a better position, which i am thinking about at the moment. Mind you, after my fall on monday i am in plaster because i have damaged my ligaments in my foot

Jane

[jetski]

Notwheels, on Jun 3 2008, 11:59 PM, said:

Is anybody else out there a "Walking Quad?"

I'd like to talk to other people who are technically Quads, but who do not require the use of a wheelchair all the time, see what kind of medical problems, levels of pain etc. you have compared to my own. I read that there are more and more Walking Quads, but I don't see them on forums like this.

Notwheels

Hi. Finally, I found my family. I have been looking for this group for 6 years now. Up until recently, I though I was imagining my condition as a walking quad.

I am a incomplete, c7, t1 & t2. My latest doctor finally gave me a diagnosis, after 6 years, of being a quadprieras (weakness in all four limbs). I became disabaled back in 2000 as a result of a schamnoma tumor that crushed my spinal cord.

It has taken me 6 years to learn to walk again, and I am making progress. I was 60 years old when I became disabled, and it has been a fight ever since. I loss the use of my hands, all my body organs and legs.

My best advice is to never give up. My biggest complaint is that we(as walking quads) are not readily recognized by the medical profession and those that administer our healthcare.

I read through some of the descriptions even on this site and I could not find a definitive defination of the tern describing WALKING QUAD. As a group, we collectively have specific problems that pertain only to us. Problems that we (as walking quads) can only understand and acknowledge.

Apparently, on the world scene, we comprise a very small percentage of spinal cord injuries.

I have to close for now, but will write more later, as I have much to learn from all of you.

Bill in Illinois.
Feel free to write. jetski@grics.net

[robbo100bike]

Just like me

where do you live?

I have the option of my lateral ligaments being shortend to bring my foot into a better position, which i am thinking about at the moment. Mind you, after my fall on monday i am in plaster because i have damaged my ligaments in my foot

Jane
[/quote]


Hi Jane

I am in Leeds. A few years ago a surgeon looked at achilles and conclusion was that it is damaged and surgery could rectify but woud mean hospital time, rehab and problem might recurr. I didnt fancy it much and can/do live with problem.

I am always falling over. much to the delight of my little girl!! My achilles hurts bad if i catch a toe when walking and causes it to compress, compounding the injury. I use an AFO splint. And have also got a carbon fibre foot drop splint. Tried an electro stimulation foot drop system once, which worked well but not practical. Using a chair is easier.

How did your injury occur?

PS How many times do you hear "so what have you done to your legs"??????????????

I have on occasion said its terminal verruccas!!!!

[rkzenrage]

I can walk short distances with a walker, or a cane on a really good day. Other than that, I'm in the chair.
My pain levels are very high, but I deal. Am now in the process of having pain blocks done... they may affect how much I can walk (less) but help with the pain.
I also have a spinal cord stimulator that helps.

[jane]

[
Hi Jane

I am in Leeds. A few years ago a surgeon looked at achilles and conclusion was that it is damaged and surgery could rectify but woud mean hospital time, rehab and problem might recurr. I didnt fancy it much and can/do live with problem.

I am always falling over. much to the delight of my little girl!! My achilles hurts bad if i catch a toe when walking and causes it to compress, compounding the injury. I use an AFO splint. And have also got a carbon fibre foot drop splint. Tried an electro stimulation foot drop system once, which worked well but not practical. Using a chair is easier.

How did your injury occur?

PS How many times do you hear "so what have you done to your legs"??????????????

I have on occasion said its terminal verruccas!!!!
[/quote]

I didn't get on with my afo- it made me fall more

I had a heamangioma on my spinal cord removed and resulting damage.

I know what you mean - funny how people ask you when you are walking but not when in a chair

Jane

[athaldo]

Hi everyone.

There are slight discussions involving AFO's. My PT years ago wanted my to have a pair made- they are from sole to mid-thigh.I asked her a couple of times if I REALLY needed them and she replied :"Oh, if it's the money you're worried about,they are only $1,300 some dollars"...Hummm..I think SHE was more into the money than I was!!I always thought AFO's were crap! Most ppl in the therapy gym thought so ,too!Well, I try them on and the knee "hinges"were too tight.But that is the way my PT wanted them to be. I had alot of spasticity to my legs. I fell outside a short block of rehab with them on and chipped a tooth and held up traffic for heaven's sake!! !Well.... I donated them shortly thereafter! (AFO?-HEY! f. o.!)HA! I did better without them,anyways. With much effort,patience and a little extented musculature anatomy knowledge, I am much better for this. My point? hummm, just to add my two cents re. AFO's, and to always imply the importance that the ONLY person who knows your body more is .............wait for it..............YOU ! Take care everyone and Happy Canada Day to my fellow Canucks!

This post has been edited by athaldo: 30 June 2008 - 10:13 PM

[jane]

athaldo, on Jun 30 2008, 11:10 PM, said:

Take care everyone and Happy Canada Day to my fellow Canucks!

I was in London on Monday and there was a big thing happening in trafalgar square for canada day - don't know what though.

Had a great day, but forgot how dirty my sleeves would get wheeling around the streets.

still, had a good boat trip - the london eye river cruise - they have a lift on their boat so i could go to top deck which made me happy.

Jane

[bevs]

Hi All,
I have MS with very limited mobility I have foot Drop and I'm trying to find someone to help with advice as to where I could get some info on a carbon fibre AFO.
The Leg support they supply is uncompfy too big to fit in my shoe and there must be something better out there.
I look them up on the web but can't seem to get anywhere
Bevs

[robbo100bike]

bevs, on Jul 31 2008, 06:45 AM, said:

Hi All,
I have MS with very limited mobility I have foot Drop and I'm trying to find someone to help with advice as to where I could get some info on a carbon fibre AFO.
The Leg support they supply is uncompfy too big to fit in my shoe and there must be something better out there.
I look them up on the web but can't seem to get anywhere
Bevs

I have the toe off carbon splint but havent used it in years because i find a standard AFO works just as well. It does have good "spring" tho. Make sure its well padded, mine rubbed my shin at 1st.

http://www.benefitsn...detail/2645.htm

[stellaris2]

Another walking quad! Immediately after my injury, I could only move my left arm, head and neck, but gradually, function came back, and now, 18 months later, I can walk with a stick, albeit for short distances. My right side is still much weaker than my left, but I'm still plugging away at the physio. My motto has been 'try everything'. If someone told me wearing a dead mole around my neck, and standing at a crossroad at midnight would help, I'd give it a go! ( Not quite true, but you get the idea)

[dpack310]

Hi friends... I too am a walking quad (C3-4 incomplete) injured 2001. Over the past 2 years I felt like I was slowly loosing the function I had.
I was fortunate enough to get back enough to be able to drive again. I now have trouble just getting out of bed. I had a Baclofen pump implanted to help with spasticity but it never seemed to help.
I'm looking foranyone who may have experienced similar "regression". I would love to compare notes and treatments. feel free to email me please.

Dave
dpack310@comcast.net

look forward to talking to you.

[Trinity]

dpack310, on May 19 2009, 04:35 PM, said:

Hi friends... I too am a walking quad (C3-4 incomplete) injured 2001. Over the past 2 years I felt like I was slowly loosing the function I had.
I was fortunate enough to get back enough to be able to drive again. I now have trouble just getting out of bed. I had a Baclofen pump implanted to help with spasticity but it never seemed to help.
I'm looking foranyone who may have experienced similar "regression". I would love to compare notes and treatments. feel free to email me please.

Dave
look forward to talking to you.

Hi Dave
Welcome to the site!

Was it the baclofen that caused your regression?

[Hikkakaru]

I can walk.

That said, I spent 95 percent of the time in my wheelchair.

My abilities don't make it a viable option for any long period of time, so i'd rather be inconvenienced with a wheelchair than inconvenienced with broken wrists from the fall.

[tonimichelle]

i walk....i broke c4-5 incomplete july 26, 2008. i walked out the rehab doors on sept. 12, 2008 and i've kept getting stronger everyday. now i rarely use my cane but always have an afo on my left foot cuz it drops. and my left knee doesnt bend much bcuz of tone so i walk kinda stiff legged on that side. my left shoulder is constantly stiff and painful and my left hand is semi working. my right side, all of it is normal strength and mobility, just doesnt feel hot/cold......

people ask when they see me for the first time--what did you do to your leg?

...toni

[Tetracyclone]

Oh happy happy happy- I found the walking quad thread! I just passed my one year anniversary of the bike/car accident that left me C-5/7 incomplete. I am 58. Post accident, I could only lift my right forearm. There was no movement at all in the legs for a full month, but my sweet surgeon (accident happened in Taiwan, but my surgeon spoke decent English) kept repeating, "Be patient. The neck looked good when we put it back together. I think you will get some function."

6 1/2 months in hospitals in Taiwan. When I moved back to our apartment I could walk with walker about 100 feet a day, plus lots of practice standing and bending. The left arm came along very slowly but that was partly my own fault for giving up on it. Now I'm working hand exersizes into my rountine pretty well. What a thrill when I could type with all ten fingers, though my error rate is horrendous. It is difficult to uncurl my left fingers.

2 months of apartment life in Taiwan, where I had a full time caretaker, as in the hospital. Three months ago my husband and I returned to upstate New York, where I had 2 weeks to learn to be by myself all day. Luckily, bladder and bowel function was smoothing out just enough so this was possible. I was walking 500 ft. per day with sticks, but have sworn off it for awhile in an effort to get over ulnar nerve pain in the right arm. Called cubital syndrone, it seems to have been caused by using the elbow to lever myself up off the mats, plus use of canes. Anyway, I have a recumbent exersize bike I can use to continue strengthening my legs while I rest the arm.

I find Physical Therapists are not knowledgeable about the fact that we can injure ourselves (lots) doing therapy with a badly atrophied body. I guess some patients are not motivated because they always want me to try try try- but I am a person who will try until I'm broken from trying too hard.

My balance is still wretched and I'm told that strengthening my trunk muscles will help with that. Weakness is much worse on the left side. Yes, my left foot drops, but I'm slowly improving that and learning to lift the whole foot, and the toes a little. I have an AFO, but I'm not keen on wearing it.

The exersize bike is lovely. I can step through it and usually pedal for 25-30 minutes. Many days I have to quit early because of spasms in the foot. The more I do, the more I have spasms. The average level of exersize increases month to month while the spasms remain about constant. I climb 17 stairs daily. I take 700 mg of gabapentin and 20 mg of baclofen daily. I have some shooting pains in my hands now, plus random pains elsewhere, but they don't last long and so do not worry me. They surprise me, I squeal, then i forget about them.

My diagnosis reads "tetraplegia with weakness in all 4 limbs. The weakness is terribly frustrating. Sometimes I wish I were back in Taiwan, where they see many more SCInjuries. At least I can turn to this thread and ask questions- How much can you push against the weakness before you simply cannot do anything?

Love to hear from all of you. Pwuff

[jane]

dpack310, on May 19 2009, 04:35 PM, said:

Hi friends... I too am a walking quad (C3-4 incomplete) injured 2001. Over the past 2 years I felt like I was slowly loosing the function I had.
I was fortunate enough to get back enough to be able to drive again. I now have trouble just getting out of bed. I had a Baclofen pump implanted to help with spasticity but it never seemed to help.
I'm looking foranyone who may have experienced similar "regression". I would love to compare notes and treatments. feel free to email me please.

Dave
dpack310@comcast.net

look forward to talking to you.

Hi Dave

I have had something similar - i am slowly regressing, i got some good function back, now it is going. Trouble is, i now feel that using my wheelchair is giving up, so just push myself until i collapse with exhaustion. which is probably nto the best idea.

Jane