527 replies to this topic

[Joel.H]

I walk unaided. Some days almost normal when my legs feels smooth:) and some days a bit more stiff. I can walk for about 2 km but then Im real tired and have to rest for a while. I still use my wheelchair sometimes but thats rare. Im stronger on my right side and I feel a bit strange on that side.

I have made some videos on me walking and it would be nice to see some videos from you out there:)

Here is my videos:

[Mrs Wisteria]

Welcome Joel
Fantastic that you can walk so well - its so helpful for others to see and learn of your progress. I hope you will find much support and friendship in the forum. There have been some really positive debates and info sharing posts about 'walking' in recent days so your post is really timely.
Best wishes
take care
Vicki aka Mrs Wisteria

[Liz56]

I'm a walker of sorts, with two forearm crutches with soft anatomical handgrips. Around the house I do my slightly drunken lurch, often bouncing off walls. Free form walking without a wall beside me is scary because my feet don't end up where I think they are going, which means I end up doing a bit of a dance to keep my balance. With the crutches I can move reasonably freely with a swing through movement, but constantly having to press down on the hand grip to get my leg lifted to start the swing through really hurts my arthriticky hands, elbows, upper back and shoulders. My arms limit my walking to 25 yards at a time for that reason, but I also end up with really buzzy and very uncomfortable feet as well. I can actually do very short distances (from car into house, etc) easily without crutches, but it kind of involves a bit of a pushing off to start moving and then propelling the few steps until I can either stop myself with hand on the wall, or use the wall to push off for the next 5 yard burst. If I'm tired, its very slow and laboured movement even with crutches. In town I hire a shopmobility electric scooter.

[The Black Sheep]

I walk with a walker up to 60, maybe 70 feet, on a good day. My knees give out and I don't have the strength to hold them for more than that. I can stand indefinitely, but the movement tends to make them buckle. After my walk, I can wait an hour or so and they're ready for more abuse. My record was 210 feet once on oak floor with sneakers on, but by the time I finally called it quits, I didn't even have the energy to pick my arse up off the floor and I just fell straight down. We have carpet now =D

Tried a cane and I absolutely cannot balance. I usually have a death grip on a walker, but I'm not ready for one stick yet.

[Tarkus]

I walk unaided. Some days almost normal when my legs feels smooth:) and some days a bit more stiff. I can walk for about 2 km but then Im real tired and have to rest for a while. I still use my wheelchair sometimes but thats rare. Im stronger on my right side and I feel a bit strange on that side.

I have made some videos on me walking and it would be nice to see some videos from you out there:)

Here is my videos:

T4 !!
That's a freaking high bar you set there brother, congrats.

I'm a walkie but it's more like John Wayne ...drunk !
No need for videos of that.

Ok so you called all of us, where we going ?

Be Big,
AMAC

[Priscilla]

Well, I went to an ortho doctor to get a re-check of my ankle via x-rays and MRIs. It is confirmed that my talus bone in my ankle/foot has officially died. I currently walk with a walker and am slowly trying to transition to a quad cane. I was able to walk unaided for all of 3-4 steps several days ago just to see if I could do it. I had an appt with my Spinal Cord doctor on Friday and he told me absolutely do not walk unaided as that will accelerate the collapse or disintegration of my dead foot bone. So I am now stuck with a cane or a walker unless a tertiary hospital can do a bone replacement.

[ClaraTaylor]

Ok so you called all of us, where we going ?

Be Big,
AMAC

Where ever your imagination will take you.

[lavenderthistle]

Well, I went to an ortho doctor to get a re-check of my ankle via x-rays and MRIs. It is confirmed that my talus bone in my ankle/foot has officially died. I currently walk with a walker and am slowly trying to transition to a quad cane. I was able to walk unaided for all of 3-4 steps several days ago just to see if I could do it. I had an appt with my Spinal Cord doctor on Friday and he told me absolutely do not walk unaided as that will accelerate the collapse or disintegration of my dead foot bone. So I am now stuck with a cane or a walker unless a tertiary hospital can do a bone replacement.

I had part of my talus die. The first core decompression/ microdrilling was a fail. The second however has held since '04, and I've broken that same ankle since. I had no grafting done . They drill holes with something a bit like a spinal tap needle to hit the bone below, force a new bleeding injury which then sets up a hard scar. In the last operation the surgeon clipped off the end of my tibia to keep it off the weakened spot. Post surgery is total non weight bearing for 2 months.

If you search osteochondral lesion you will have more luck with information. This is also called osteonecrosis, or avascular necrosis.

If this is a very new lesion non weight bearing now can help.

I failed to note which side of the pond you were on when I replied. If you are on this side get a second treatment opinion and find out how large your lesion is. Feel free to ask me anything. I might have some resources.

[Priscilla]

I had part of my talus die. The first core decompression/ microdrilling was a fail. The second however has held since '04, and I've broken that same ankle since. I had no grafting done . They drill holes with something a bit like a spinal tap needle to hit the bone below, force a new bleeding injury which then sets up a hard scar. In the last operation the surgeon clipped off the end of my tibia to keep it off the weakened spot. Post surgery is total non weight bearing for 2 months.

If you search osteochondral lesion you will have more luck with information. This is also called osteonecrosis, or avascular necrosis.

If this is a very new lesion non weight bearing now can help.

I failed to note which side of the pond you were on when I replied. If you are on this side get a second treatment opinion and find out how large your lesion is. Feel free to ask me anything. I might have some resources.

Thanks lavender for the info. I am from upstate NY. How did you handle with non weight bearing for two months? I do not have a home in which that is an option. There are stairs to get in and out of the house and up to,our bedroom. My husband could not possibly carry me everywhere I need to go and the doors are not wide enough to get into the bathroom with a wheelchair. Did you have to stay in the hospital after your procedures? I guess that is an option I will have to weigh as the time gets closer. Thanks!

[DannyR]

I had part of my talus die. The first core decompression/ microdrilling was a fail. The second however has held since '04, and I've broken that same ankle since. I had no grafting done . They drill holes with something a bit like a spinal tap needle to hit the bone below, force a new bleeding injury which then sets up a hard scar. In the last operation the surgeon clipped off the end of my tibia to keep it off the weakened spot. Post surgery is total non weight bearing for 2 months.

If you search osteochondral lesion you will have more luck with information. This is also called osteonecrosis, or avascular necrosis.

If this is a very new lesion non weight bearing now can help.

I failed to note which side of the pond you were on when I replied. If you are on this side get a second treatment opinion and find out how large your lesion is. Feel free to ask me anything. I might have some resources.

Thanks lavender for the info. I am from upstate NY. How did you handle with non weight bearing for two months? I do not have a home in which that is an option. There are stairs to get in and out of the house and up to,our bedroom. My husband could not possibly carry me everywhere I need to go and the doors are not wide enough to get into the bathroom with a wheelchair. Did you have to stay in the hospital after your procedures? I guess that is an option I will have to weigh as the time gets closer. Thanks!

When I came home from the hospital we had our bed in the living room for about 3 months. It wasn't decorative but it had to be done...our bedroom was upstairs also. Are you in the chair all the time or just while healing? I hated having the bed there but it was a neccessary evil for a time. It is a good motivator though.

[Priscilla]

Hi Danny. I am just walking with the aid of a walker and or quad cane. If I have this surgery it would probably force me into a wheelchair but there is no way a wheelchair will fit into the bathroom. I am starting to think that crutches may be the way to go at this point. Will have to discuss that option with my doctors. Just thinking out loud and constantly worrying about things I have no control over!

[lavenderthistle]

Thanks lavender for the info. I am from upstate NY. How did you handle with non weight bearing for two months? I do not have a home in which that is an option. There are stairs to get in and out of the house and up to,our bedroom. My husband could not possibly carry me everywhere I need to go and the doors are not wide enough to get into the bathroom with a wheelchair. Did you have to stay in the hospital after your procedures? I guess that is an option I will have to weigh as the time gets closer. Thanks!

I was day surgery both times. I used a chair but did the crutch hop into the bathroom. I probably screwed up the first surgery myself by carrying my son about 2 weeks after surgery. He was 2 and had just gashed his leg. Some things you just don't think about. If you do most of your stuff on the first floor...cooking, laundry, etc. Just use a chair on the first floor. and crutch your way up stairs.

Crutches weren't a good option for me all the time because of the hand surgery, the doctor felt there was a better chance of it healing if the falling fear was gone. another plus side is you can keep it elevated and iced and or heat on it.

wordy scholarly article on dead talus bits


osteonecrosis


Avascular Necrosis


Mine was on the talar dome (the top)

The second operation I was in a cast so that made things easier but I was still in a chair for healing. I had to use crutches while in the electronics lab and had some spectacular falls into tables.

Get all the info you can about how much is actually dead it will help you determine the best way to proceed. Get second opinions. Are you showing on Xray also or just MRI?

Get crutches and take the weight off the joint. Death continues because walking puts pressure on the joint. when part of a joint dies methane gas is actually present. More pressure, more gas, more damage..it's a cycle. In other words...stay off it via crutches or a chair. You can rent one. Use it for outings and cooking. Or take a normal chair to the kitchen and prop your knee on it (bent leg) while standing at the stove.

There is or was a great AVN group run by a lady named Marie.

[skeetie]

HI all, Again I apologize for the typing. Just had to say that it is great to see more walkers
and to realize how different but very much alike we all are. The biggest thing is people not understanding
what sci patients have to deal with,they just see you walking and figure your ok.People just have no idea,how
every movement is an effort.
As a retired nurse due to my botched surgery, I am amazed how very little I understood about sci and others also
due to specializing in certian areas of medicine. I am going to write to some of these ceu,cme providers about having a course about sci and brain injury. I think that post op when one of the nurses came in and put the siderail down an expected me to get out of bed when i could barely sit, i call it my weeble wooble move lol. Oh well things will get better just hope as a 5 yr breast cancer
survivor and 4 yr sci that I'm here to see it sry couldn't find a smiley walker
using a walker lol ps sorry for the tyoing i just look at keys and not form

[lavenderthistle]

Dearest Lady Clarington

I think the walkers should gather for tea sometime and all giggle at the way we wobble. We could all become intoxicated or use muscle relaxers and watch as we go steadily down hill.

Seriously I think perhaps we should share tips, links for cane accessories, walker accessories, chair issues since many of us don't use them often. How we deal with bladder and bowel issues if we don't cath or use a traditional bowel program. We could share links, tales of what works to make our lives easier.

I'm cutting vegetables, but doing it very differently than I did before. We can share those things...the things people like us get passed by on because we aren't "injured enough" the things, tips, tricks we've taught our selves. Clara you have a lovely example you shared with me in email about your early walking days.

I had to learn about visceral pain and it's MANY meanings for me. Learning to read where the wall is before we hit it and wind up over used for the day. Shall we start threads about this or keep adding here?

xoxo

your faithful friend

Lady thistles of Lavender

[ClaraTaylor]

Dearest Lady Clarington

I think the walkers should gather for tea sometime and all giggle at the way we wobble. We could all become intoxicated or use muscle relaxers and watch as we go steadily down hill.

Seriously I think perhaps we should share tips, links for cane accessories, walker accessories, chair issues since many of us don't use them often. How we deal with bladder and bowel issues if we don't cath or use a traditional bowel program. We could share links, tales of what works to make our lives easier.

I'm cutting vegetables, but doing it very differently than I did before. We can share those things...the things people like us get passed by on because we aren't "injured enough" the things, tips, tricks we've taught our selves. Clara you have a lovely example you shared with me in email about your early walking days.

I had to learn about visceral pain and it's MANY meanings for me. Learning to read where the wall is before we hit it and wind up over used for the day. Shall we start threads about this or keep adding here?

xoxo

your faithful friend

Lady thistles of Lavender

My Darling Thistles,

I think it would probably be best if we separated up the hints and tips otherwise it will prove most confusing for new people to find it when they're looking for information. Certainly I know that when I was looking for help and first came here I must have spent hours reading posts trying to sift the waffle and good humour from the DIY guides.

Don't give me muscle relaxers in my tea my dear sweet! I just end up unable to get up at all! It's like taking lemsip with my pregablin: all of a sudden I go quite relaxed, completely pain free, and unable to get off my rump. (No idea what is in Lemsip that does this since it's mainly paracetamol but I can assure you it is absolutely hilarious and the only time I'm completely pain free. My doctor has even suggested it form part of my night time routine on really bad nights. It's cheaper than whisky and in his eyes, it's a waste of whisky).

Oh I do waffle.

I wish you all a very lovely day and look forward to contributing, bruises and all, to the threads later on.

Love
Lady Clarington x x x

[Tatiana]

I can walk with 2 elbow crutches for a very short time..in one go about 5ish mins (10 mins if very slow)..i still walk with a bit of a limp with these.

If I try walk with one around the house..my limp is much more exxagerated and is more exhausting.I have tried walking without (about 4 steps) and its freaky wierd and gives a new meaning to the word gimp..lol

[Priscilla]

Well, I have started the slow transition over to a quad cane. It took me 10 minutes to walk into Dunkin Donuts this morning with my husband right by my side. My left foot only got stuck on the ground three times. People looked at me and could not figure out what I suffer from. I just want to educate them on this incomplete spinal cord stuff. Guess I will have to get used to all the stares. The next step is to be independent with a cane and get off this walker! I am just so worn out from this morning. Ugh....

[ClaraTaylor]

Well, I have started the slow transition over to a quad cane. It took me 10 minutes to walk into Dunkin Donuts this morning with my husband right by my side. My left foot only got stuck on the ground three times. People looked at me and could not figure out what I suffer from. I just want to educate them on this incomplete spinal cord stuff. Guess I will have to get used to all the stares. The next step is to be independent with a cane and get off this walker! I am just so worn out from this morning. Ugh....

A HUGE CONGRATULATIONS on starting with the cane!! You'll soon stop noticing the stares especially as your confidence grows with the quad cane.
It will get easier. Slowly. We can't promise that there wont be backward steps or times when you want to give up but eventually you'll realise just how far you've come.

[dancin' johnny]

I still keep reading the title wrong, still, it brings me to a place of encouragement and support that warms my smoke damaged ticker. How could anyone be negative about people getting up and having a go at walking. Stumblers, wobblers, twisty hips and wall grabbers unite. Hey Mr Red Trousers, link them to your moonwalk vid.

[Priscilla]

I still keep reading the title wrong, still, it brings me to a place of encouragement and support that warms my smoke damaged ticker. How could anyone be negative about people getting up and having a go at walking. Stumblers, wobblers, twisty hips and wall grabbers unite. Hey Mr Red Trousers, link them to your moonwalk vid.

All of us Wankers unite!

[Tetracyclone]

I still keep reading the title wrong, still, it brings me to a place of encouragement and support that warms my smoke damaged ticker. How could anyone be negative about people getting up and having a go at walking. Stumblers, wobblers, twisty hips and wall grabbers unite. Hey Mr Red Trousers, link them to your moonwalk vid.

All of us Wankers unite!

If it were titled Walkers Who Wank there would be all the same posters.

[Kiefan]

I walk too.. but not in greater distance such as shopping mall/museum/zoo etc... i am using crutch both hand.. but can't yet walk fast enough as normal people..
In my country they rarely see a disabled person, so wherever i go they always watch me walking.. (you can't imagine how the see me while i'm on my wheelchair lol)
thanks.... sorry for my bad english..

[julibugs]

Does anyone else find that they have to fiddle with meds in order to have the optimum spasticity in order to walk? I get really bad spasms and take baclofen to control this but when it gets really bad I take diazipam but that means I can't really walk for a good 4-6 hours. I struggle to get the baclofen just right and I know that my walking is best about half way between the 4 hourly doses of baclofen.

[lavenderthistle]

Julibugs, I know that was discussed at one point. I want to say MTBJohn (when he was here) started a thread or mentioned it.

I find the more meds I take the less function I have. I'm just butting in because I had insomnia ,yet again, and recalled seeing something about this recently on forum.

My buttinski reply is , not me....but I know you are not alone.

[Tetracyclone]

Juli-
yes, I juggle meds to influence my walking and movement. Too little and my left leg curls in, causing me to list to the right. Too much and I fall asleep. I use baclofen and gabapentin. i never cchange the baclofen- it does not seem to matter.

[DannyR]

I take baclofen and when the weather is cold and windy as it is now I sometimes have to double up if not my legs are stiff as a board. I am 3 years out today and this winter seems to be harder on me than the last 2. I got caught out one day last week and the legs stiffened up as I was going to my car and I had to have help or I wouldn't have made it. Once in the car with the heat and heated seat on my legs let loose some.

[ClaraTaylor]

I find I have often to increase my pain meds to keep myself walking (cold weather, end of the working week, period, over doing it...) Once the pain gets too much my back feels like it seizes solid and my position finds itself relocated to floor level. Never find too many pain killers mean I loose the ability to walk fortunately (aside from if I take pregablin and lemsip! Weird reaction and not something you tell the receptionist when trying to get an appointment with the GP. Panic will take over her pretty face!)

This has resulted in evenings where I've been unable to walk into the beer tent but have been able to walk out! We call this my reverse drunk

Heated car seats are AWESOME! Many trips out where I've hit the wall and ended up in pain level agony (where I would normally expect to spend DAYS recovering) have been rescued by a heated seat on the way home. (I'm not above carrying a hot water bottle with me and asking waitresses to fill it with hot water when we've gone out for a meal).

[Tetracyclone]

It is so useful to hear you Clara, and Danny, speak of your legs seizing up in the cold. Mine do as well, but they do it for other reasons as well, so cause can be confusing. I had not really tried increasing the baclofen may.

Edited by Tetracyclone, 11 February 2012 - 02:18 AM.

[Shane G]

I'm a walker, about 50% of the muscles function on my right side so I walk with a noticeable limp. Some days I walk better than others, it just depends on the stiffness of my leg and how well I stretched in the morning.

That's a great video Joel, you walk great! I think I'm going to shoot a video of myself walking so I can see what it looks like.

[Joel.H]

I'm a walker, about 50% of the muscles function on my right side so I walk with a noticeable limp. Some days I walk better than others, it just depends on the stiffness of my leg and how well I stretched in the morning.

That's a great video Joel, you walk great! I think I'm going to shoot a video of myself walking so I can see what it looks like.

Hi Shane G!

We seem to have many things in common. I also feel stiff in my legs, some days better and some days worse. My left leg is weaker than my right. Do you train your weaker side more or do you train equally? Would really like to see some videos. Take care