Advice for gaining independence C5/6

[Klymir]

I am hoping for some advice from other SCI's on gaining my independence. I am a C-5/6 complete injury with a ton of spasticity [my hands are almost always locked closed due to spasms, and violent leg and abdominal spasms] one-year post-injury.

Thus far I can put myself to bed completely on my own; transfer, undress, switch leg bag to night bag. I can also independently dress myself in the morning.
The biggest problem I face right now in my morning routine is setting up my condom catheter and leg bag. I found out about some quad friendly Coloplast condoms which have a pull tab, so I'm going to order some of those and learn how to use them. Any reviews on those?

Also, what company makes a leg bag that is easy to put on (Velcro straps, easy to release clip for emptying)?

Once I figured that out, I will be independent except for bowel care and shower. The commode chair I have right now is one that needs to be pushed by my care aide which is preventing me from working on these things on my own.

Which is a good commode chair that I can wheel, fits easily over a regular toilet, has a design which makes it easier to lean forward on my knees, reach underneath to do a bowel check, and then get back into sitting (obviously without triceps) and allows for an easy safe transfer from the bed?



On a side note, in the past two months my spasticity has gotten worse and worse as I have become more and more active. I thought the opposite would be true. Is my spasticity increasing due to small and unnoticeable returns in nerve connection? Spasticity makes working on my independence much more difficult so I am hoping that in the next year things will stabilize, and then hopefully decrease. Wishful thinking?

Thanks in advance everyone for your advice. Seasons greetings! :)

P.S. It's bloody hard to wheel in the snow!!
*I'm dreaming of a brown Christmas*

[SCI-Nurse]

Klymir, can you complete your profile? Are you in the USA or where?

I am curious about why you have chosen reflex voiding as your bladder management method vs. intermittent catheterization. The latter is possible for most males who are C6 (esp. if you have tenodesis) and is safer for your body in the long run. Properly managed, with medications, etc. this would also mean no need for an external condom catheter or bags.

As far as commode chairs, in order to get the best access for bowel care for either you or a caregiver, there are a number that are usually called "rehab" commodes. You can find them from companies such as Sunrise Medical or ActiveAid, but I am sure others here will also make recommmendations. Top end if you also want to use it for travel would be one of the Nuprodx commodes.

What medications are you taking for your spasticity? In what amounts? Are you also standing daily? Doing range of motion and stretching exercises at least once daily? Proning (laying on your stomach) part of each day or night? Have you discussed a baclofen pump with your SCI physician?

(KLD)

[aaronykc]

I am hoping for some advice from other SCI's on gaining my independence. I am a C-5/6 complete injury with a ton of spasticity [my hands are almost always locked closed due to spasms, and violent leg and abdominal spasms] one-year post-injury.

Thus far I can put myself to bed completely on my own; transfer, undress, switch leg bag to night bag. I can also independently dress myself in the morning.
The biggest problem I face right now in my morning routine is setting up my condom catheter and leg bag. I found out about some quad friendly Coloplast condoms which have a pull tab, so I'm going to order some of those and learn how to use them. Any reviews on those?

Also, what company makes a leg bag that is easy to put on (Velcro straps, easy to release clip for emptying)?

Once I figured that out, I will be independent except for bowel care and shower. The commode chair I have right now is one that needs to be pushed by my care aide which is preventing me from working on these things on my own.

Which is a good commode chair that I can wheel, fits easily over a regular toilet, has a design which makes it easier to lean forward on my knees, reach underneath to do a bowel check, and then get back into sitting (obviously without triceps) and allows for an easy safe transfer from the bed?



On a side note, in the past two months my spasticity has gotten worse and worse as I have become more and more active. I thought the opposite would be true. Is my spasticity increasing due to small and unnoticeable returns in nerve connection? Spasticity makes working on my independence much more difficult so I am hoping that in the next year things will stabilize, and then hopefully decrease. Wishful thinking?

Thanks in advance everyone for your advice. Seasons greetings! :)

P.S. It's bloody hard to wheel in the snow!!
*I'm dreaming of a brown Christmas*

wow! dude for a 1 year post you are doin really well! keep it up :)
Im having some problems with spasticity as well, i take baclofen but it only helps a little. I have to stretch before doin transfers to make it easier to manage my legs. I find it strange that your spasms get worse when you're more active, cos lack of activity makes mine worse. Plus my spasticity got worse in time, it wasnt so bad when i was still in rehab, my doc n i are trying to figure this out. Maybe u should talk to your doctor bout your spasms. I use a self propelling commode that i can push myself to the toilet with, you can check out soprtaid.com im sure u can find a commode that will suit your needs.
Good luck :)

[SCI-Nurse]

That would be www.sportaid.com They have a pretty good selection.

(KLD)

[dgrotz]

You are much more independent than I ever managed to be, that is great for you. Regarding the spasms I would highly recommend a baclolfen pump. I took oral baclofen for many years with little relief, the pump has been a godsend.

[fuentejps]

if u can do it no meds is best. control your spasms w/ standing. the cond cath is tricky, i only where one at night and it took me a bit to figure out how to get it on. great on your ind, keep it up. ind is everything.

[Klymir]

I am curious about why you have chosen reflex voiding as your bladder management method vs. intermittent catheterization. The latter is possible for most males who are C6 (esp. if you have tenodesis) and is safer for your body in the long run. Properly managed, with medications, etc. this would also mean no need for an external condom catheter or bags.

after doing urodynamics to check the pressure in my bladder during voiding and residual fluid afterwards, my urologist, and my SCI physician agreed it was not necessary for me to bother doing catheters. Since that decision was made however, I think things might have changed so I'm going to look into cathing myself once a day.

What medications are you taking for your spasticity? In what amounts? Are you also standing daily? Doing range of motion and stretching exercises at least once daily? Proning (laying on your stomach) part of each day or night? Have you discussed a baclofen pump with your SCI physician?


I take 20 mg of baclofen each morning, and 10 before bed. I do not stand daily, but I do get a lot of range of motion on my legs with dressing as well as stretching at that time. I also get on my stomach at these times. My spasticity is not debilitating enough for me to consider a baclofen pump (as well as the fact that i play rugby and skydive, which i heard is unsafe with a baclofen pump). I am looking to find a Moto-med leg bike which I could use every night to help with circulation and to reduce spasticity.

I am looking into the commodes.

Thanks for your help.

[Klymir]

wow! dude for a 1 year post you are doin really well! keep it up :)

am i? im always hard on myself so i figured i should have been further along by now.:)

Im having some problems with spasticity as well, i take baclofen but it only helps a little. I have to stretch before doin transfers to make it easier to manage my legs. I find it strange that your spasms get worse when you're more active, cos lack of activity makes mine worse. Plus my spasticity got worse in time, it wasnt so bad when i was still in rehab, my doc n i are trying to figure this out. Maybe u should talk to your doctor bout your spasms.

okay, I should clarify. When I exercise my spasticity does decrease for a few hours. I'm having the same problem that you are, in that my spasticity is getting worse as time goes by. I'm also getting more active as time goes by. I guess the two aren't related but i thought they might be.

I use a self propelling commode that i can push myself to the toilet with, you can check out soprtaid.com im sure u can find a commode that will suit your needs.
Good luck :)

Dude, sportaid.com is awesome! Stuff looks really cheap on their, thanks for the link.
Happy new year!

[SCI-Nurse]

You are doing very well for one year after. And you certainly are working very hard. Just a word on your spasticity - it appears for many people, their spasticity increases over the first 18-24 months, plateau's and then decreases slightly, so there is hope that it will tone down (no pun intended). In the meantime, it appears as though you are doing everything that you should to manage it.

Just one other word of caution - try not to overextend yourself on the amount of energy that you put out early in the day. All of these ADL's may make it more difficult for you to be able to do other things later in the day. In other words, pace yourself.

Happy New Year!

CKF

[wtf]

Just one other word of caution - try not to overextend yourself on the amount of energy that you put out early in the day. All of these ADL's may make it more difficult for you to be able to do other things later in the day. In other words, pace yourself.

Happy New Year!

CKF

The sci-nurse gives good advice. I'm a c5/6 too but I function at c6, I think its possible to be independent with the right equipment, definitely get the commode you can push yourself, I use an activeaid at home but when I travel I use an old manual chair that I cut a hole in the seat and made my own seat cushion for it (works great). You're on a faster pace than I was, it took me about 2yrs to figure out everything to be independent. I tackled one thing at a time until I had it down, I probably could have achieved independence faster if I didn't take a few months off in between, it was during these times I would tell my mom or sister "its much faster,if you just do this for me" but eventually I got frustrated having to wait for them to finish whatever they were doing to come help me. Where we differ is I don't have spasticity problem, so I have no advice on that except I can see how that would make it more difficult for you. Keep up the work you'll get there.

[cass]

i am f, function at c7. do not understand the push for ic. i never would have maintained my job, drank as much water, etc. if i had not insisted on foley 22 yrs ago. sure would never have gotten any sleep. but....i'm f.

btw, urocare has velcro straps, quick drain (quad) clamp, all of it. just search urocare. used their stuff over 20 yrs.

[summergirl89]

i just want to say that for one year post you are doing awesome. it took me going to a rehab across the country where i had intense therapy 8 hours a day for me to even get motivated to do anything on my own. great job!

[fuentejps]

agreed, u r kicking ass. being ind is the key to a happy gimp life. sure its faster when someone does it 4 u, but that is not the way to be. do everything, it will just keep getting easier

[leschinsky]

i am f, function at c7. do not understand the push for ic. i never would have maintained my job, drank as much water, etc. if i had not insisted on foley 22 yrs ago. sure would never have gotten any sleep. but....i'm f.

.
Because in the long run ic is much better health wise i.e. utis, stones, cancer. When I was having tests before my mitro surgery last year docs kept telling me how amazed they were by the results saying they were used to seeing unhealthy urinary systems. I've always slept all nite, however, it was very restricting work wise, until I got the mitro.