[dom]

Hi Guys

This newtopic may have replies or no, depending on the interest.

I am a L1 walker,incomplete,technically paraplegic although glad for the mercies that i have after reading the terrible circumstances that some of you are in i would like to know more about the difficulties some of us less injured go through day to day.

I use catheters for instance and when i use a public toilet i have to use the disabled one due to the embarrasment of people looking at me when i have a piddle in the urinal!

Also i use gloves for digital evacs and invariably there is'nt a bin to put the soiled glove in , what am i supposed to do? put it back in my pocket along with the used catheter!!!

I have had funny looks on three occasions from women with babies etc when i come out of a disabled loo cos i 'look' able-bodied.

My doc says i have cauda equina syndrome and without wanting to be too crude it feels like a broomstick is shoved up my arse all the time!!! [may suit some people but i am definitely hetero]

I have weak right ankle which was exacerbated when i did physio [it puffed up like a balloon] so it was'nt the muscle but nerve damage the doc advised against over excercising it.

I felt out of place in my spinal hospital, maybe a bit paranoid but when i went in the dayroom etc i was closed out of conversation,has anyone had this?

One patient in bed called me a 'fake sci' i took it as a laugh but it left a slightly bitter taste in my mouth
another said 'WHAT ARE YOU DOING HERE? i told him of my shot to pieces bladder and bowels and he sympathised afterwards but i thought that if i had'nt explained he would maybe have thought badly of me
probably a little too sensitive but these are honest views and am willing to be corrected if wrong.

btw love this site

[keps]

I'm sorry to hear of your difficulties. I have heard other walkers talk of discrimination.
I suppose people see you on your feet, and think you are perfectly fine, which is of course not the case.

When I was in rehab, one of the nurses told me that some people walked out of the unit, but still had to use catheters, etc. Well, I'm afraid to say that was news to me. I had wrongly assumed walking = normal urination etc. So I think some people are not meaning to be nasty - they genuinely just don't understand that walkers have issues too.

I tend to think: we've all had something very traunamatic happen to us, walking or no.

[Gary Anderson]

Dom

Greetings fellow cauda equina sufferer. I began to think I was the only one!!

How I relate to your problems. I just wish folks would mine there own when it comes to loos. Just because you dont use a chair does not mean you are disabled.

I was doing great with walking until a recent accident in January, now I am chairbound for now anyway. I am a bit luckier than you, I have quite good control over bowel/bladder.

Great to meet you.

[dom]

thanks fo support it means a lot to me to hear from empathetic people on these boards [hope you recover from your accident Gary] and Keps you're right about the disability issue
thanks again

[Danielle87]

Hey to everyone! Its good to hear some experiences from other walkers...I felt out of place at my SCI rehab hospital too! In a class there another patient told me I didn't deserve a wheelchair and I tried to laugh it off even though it hurt my feelings a little. I felt alone there and even when I was in pain or completely exhausted I felt like I just had no right to complain about anything. Its been two months since the accident and my walking and endurance keep gettin better. I'm still in therapy right now and I hope to go back to college in January.

[dom]

well done dannielle,good going keep it up girl!! don't deserve a wheelchair?? where's that comment come from? theres plenty of people in this world who don't deserve things and get them and vice versa,thats called life

[Tinbasher]

dom, on Apr 29 2006, 11:03 PM, said:

Also i use gloves for digital evacs and invariably there is'nt a bin to put the soiled glove in , what am i supposed to do? put it back in my pocket along with the used catheter!!!

Just a practical tip, turn the soiled glove inside out as you remove it and tie a knot in the end. This also works with caths if you use gloves when cathing just pop the used cath in the used glove. I did this for years but have just recently started using "all in one" cath kits with water, bag and cath all in one package.

Tin

[dom]

good tip tinbasher,the new catheters are great they are so easy to use and practical,just note of what happened at my new docs[i can't find my old thread] the new doc totall misunderstood my request,i use about six boxes of caths a month -25 to each box,i have'nt counted the amount of times i have a widdle every day but she wrote 25 on the script for a month! i have since corrected it but the pharmacist was aghast! that i use so many? i don't think its a lot and my old pharmacist never batted an eyelid,i told him this and he said ok,am i normal? in terms of usage btw,i got a free sample of the ready-to use caths and will try to get more of the doc when things calm down and i'm getting my correct meds,i had to up the tubes of ky gel as well cos i use about 2 tubes a month 82mg as opposed to the small 42mg i am on the loo a lot as i 'feel that i want to 'go' but sometimes my bowels are already empty and its a waste of a glove but what do ya do?
i heard somewhere that the caths cost about a £1 each!! lucky i get them free or in caths alone my costs would be £150 a month

[patricia]

Hi folks,
at last its nice to read about people with similar problems. I have CES and am having problems getting help. Although I have not had the open discrimination from other sci patents, probably because I never attended any spinal care unit. I had my surgery and was sent home after 3 weeks in hospital. I have a permenant catheter at the moment as self catheterisation has not been possible. I was sent home wearing a temporary one, no spare bags or taps. they did however give me a handfull of gloves and half a tube of lube, which i had to ask for. On return to urology 3 weeks later they were of course very apologetic. It has been 2 months now since my accident and op and i have not received an appointment from the doc whos supposed to be seeing into my bowel problem. its being chased up, of couse it is. When i asked about physio my consultant said " ok if it makes you feel better" i told him i was worried about deterioration in my legs as my feet have already become skinny. I had to ask several times. No one has offered me councelling although i think ill be ok , my husband is great but the "being a proper wife thing is getting to me a bit " when i spoke to my GP (who incedentally had no idea that i'd been in hospital , he put 2 and 2 together when asked to authorise a request for catheter bags) I said i felt like i'd been dumped and his reply was that unfortunately i was just 1 step away from a wheel chair, and although i should be relieved that im able to walk (sort of) i won't get the services coming to me as i dont fit neatly into a box.
i suppose its discrimination of sorts. and i feel let down , not least by the doc who kept me at home because i hadn't soiled myself yet!!

[Hotrodgimp]

[quote name='patricia' date='Oct 13 2006, 06:57 PM' post='18430']
Hi folks,
at last its nice to read about people with similar problems. I have CES and am having problems getting help. Although I have not had the open discrimination from other sci patents, probably because I never attended any spinal care unit. I had my surgery and was sent home after 3 weeks in hospital. I have a permenant catheter at the moment as self catheterisation has not been possible. I was sent home wearing a temporary one, no spare bags or taps. they did however give me a handfull of gloves and half a tube of lube, which i had to ask for. On return to urology 3 weeks later they were of course very apologetic. It has been 2 months now since my accident and op and i have not received an appointment from the doc whos supposed to be seeing into my bowel problem. its being chased up, of couse it is. When i asked about physio my consultant said " ok if it makes you feel better" i told him i was worried about deterioration in my legs as my feet have already become skinny. I had to ask several times. No one has offered me councelling although i think ill be ok , my husband is great but the "being a proper wife thing is getting to me a bit " when i spoke to my GP (who incedentally had no idea that i'd been in hospital , he put 2 and 2 together when asked to authorise a request for catheter bags) I said i felt like i'd been dumped and his reply was that unfortunately i was just 1 step away from a wheel chair, and although i should be relieved that im able to walk (sort of) i won't get the services coming to me as i dont fit neatly into a box.
i suppose its discrimination of sorts. and i feel let down , not least by the doc who kept me at home because i hadn't soiled myself yet!!

Your right!! Trying to get help is so frustrating. I had an appt. with my neuro. yesterday and was desperately seeking help with my deteriorating condition. I struggle like hell to stay mobile with forearm crutches and I know I can be as stubborn as anyone but all I am asking for is some help or guidance. So after I tell the Dr. of my latest symptoms he admits the medication I had been taking for the last seven months isn't working but doesn't offer anything!! He asks if I have a chair yet and suggests maybe I should get one . I had to ask him if there were any other meds. or treatments available and after telling him things I have learned through my own research he prescribed another med. and by my request is sending me to physical rehab. to try to save and regain some strength in my legs. I know there are no magic cures for my condition(neurosarcoid),and I maybe avoiding the inevitable but I can still walk a little bit and I am not going down without a fight. So I start new meds and rehab and life goes on and I am wondering if I should be looking for ANOTHER new neuro.?

[Tarkus]

Hi Guys,

I'm also CES....being it's so rare it's amazing to find so many others in one spot.

All "walkies" will from time to time get the "I'm more disabled than you Bullshit" from other people with SCI, that's something I find amazing.

The general public thinks it's black & white when we know it's not.
I, like many, thought you were paralyzed or not, I had know idea about the different levels of sensation etc.

I do now ! CES at l4/l5 has left me numb from the waist down, but thru lots of therapy I can walk but only by carrying my weight on my heels. Zero planter flex, little balance without a cane.

So I look like a drunk John Wayne but I get around. The long term effects on the hips will be a problem in time but I have found a way to make long walks with the wife and moving long distance with others.





My biggest problem has been bowel. bladder came back but it's been 2 years of laxatives and programs that control my life.

I'm thinking Colostomy just so I can get that part of it out of the way.

Drugs ? Gabapentin, lyrica etal have been of no help with the gut pain, and codeine is out of the question.

Here's the deal, THE DOCTORS DON"T KNOW!

I've been blessed with the best SCI care there is. Miami Project, Johns Hopkins, Mayo Clinic etc. and when push comes to shove all the neurologists worth their salt will tell you they don't know how to treat it. Period.

Not what we want to hear but it's always the same, improvement can go on for years but whats and how to help the pain.......for me a little Valium works.

All the best, I understand, and screw those who make half azzed remarks do as you need to do.

Regards,
Alan

This post has been edited by Tarkus: 24 October 2006 - 08:23 PM

[rkzenrage]

I have not really had anyone give me any crap. I don't know why, to tell you the truth, perhaps just lucky.
Walking causes me a lot of pain and I don't do it very often, usually just to use the bathroom... so that may have something to do with it.
If someone did have an issue with it, I would just chalk it up to ignorance and narrow mindedness & not give it much more thought. So, it may have happened, actually, & I may have just ignored them.

[sandyrun]

Tarkus, on Oct 24 2006, 05:21 PM, said:

Hi Guys,

I'm also CES....being it's so rare it's amazing to find so many others in one spot.

All "walkies" will from time to time get the "I'm more disabled than you Bullshit" from other people with SCI, that's something I find amazing.

The general public thinks it's black & white when we know it's not.
I, like many, thought you were paralyzed or not, I had know idea about the different levels of sensation etc.

I do now ! CES at l4/l5 has left me numb from the waist down, but thru lots of therapy I can walk but only by carrying my weight on my heels. Zero planter flex, little balance without a cane.

So I look like a drunk John Wayne but I get around. The long term effects on the hips will be a problem in time but I have found a way to make long walks with the wife and moving long distance with others.





My biggest problem has been bowel. bladder came back but it's been 2 years of laxatives and programs that control my life.

I'm thinking Colostomy just so I can get that part of it out of the way.

Drugs ? Gabapentin, lyrica etal have been of no help with the gut pain, and codeine is out of the question.

Here's the deal, THE DOCTORS DON"T KNOW!

I've been blessed with the best SCI care there is. Miami Project, Johns Hopkins, Mayo Clinic etc. and when push comes to shove all the neurologists worth their salt will tell you they don't know how to treat it. Period.

Not what we want to hear but it's always the same, improvement can go on for years but whats and how to help the pain.......for me a little Valium works.

All the best, I understand, and screw those who make half azzed remarks do as you need to do.

Regards,
Alan

Tarkus, may I ask if that is a seat on your "ride" that folds out when you need to sit? I have seen "canes" with a seat that folds out. Just wondering.

[Tarkus]

It's aftermarket as the Segway is not an approved mobility device. But it is protected by the ADA and other laws here in the US.



Not an option for everybody but it works for some. I Stand most of the time and use the seat for a quick break.

Feel free to contact me for any other info, no I don't sell Segways or seats. What I do sell is the idea of "Universal Design".

Please visit www.DRAFT.cc for more on the Segway and the disabled.


Regards,
Alan

This post has been edited by Tarkus: 25 October 2006 - 01:52 PM

[Joed]

Alan...

I think I could use this Segway. How much does it weigh? And, if I remember, they're quite expensive...would most insurances cover? I'm guessing not...since it's not approved as a mobilitiy device.

[Tarkus]

Joed, on Oct 25 2006, 04:15 PM, said:

Alan...

I think I could use this Segway. How much does it weigh? And, if I remember, they're quite expensive...would most insurances cover? I'm guessing not...since it's not approved as a mobilitiy device.

Depending on the model 55 to 80 lbs. I use a scooter lift to put it in my SUV.

As you have so astutely put it, no insurance will cover it as it's not FDA approved.

Cost new is around 5 grand but I have found many used for about $2500.00 to 3500.00.
Matter of fact I bought a second Segway to use for air travel. A little lighter and FAA approved batteries.

Not cheap but being that I could stand I looked at risk, reward and price then went for it.

If you need any other info feel free to contact me.

Regards,
Alan

PS-Sorry, I did not mean to "hijack" this thread.

[benok]

Quote

I have had funny looks on three occasions from women with babies etc when i come out of a disabled loo cos i 'look' able-bodied.

I get to ambulate once in a while using forearm crutches but I have to use the wheelchair every now and then because I tire easily. Just like you, I look able bodied but am an incomplete SCI.

I was once attending to my therapy sitting for a while waiting for my appointment. an elderly lady approached me and said she wants to use my wheelchair. She cannot move around the hospital because she is already old.

She mistook me for an able bodied guy loitering on a wheelchair. How looks can decieve others.