[PigSnack]

I'm a partial T3 who can walk, but with a great amount of discomfort due to spasticity, weakness, clonus, etc. I'm wondering how many people out there are walkers with pumps?

I take 40 mg Baclofen orally 3x daily and I am getting diminishing returns. I am at about 4 years (post injury) taking this drug. With a pump I hope to have less spasticity and less fatigue from taking so much of the drug orally. Is this reasonable?

[Hotrodgimp]

I have t-spine damage due to neurological sarcoid and have suffered from spasticity. I was up to 120 mg of oral baclofen daily and since having the pump put in I do not take oral med and my pump is at a very low setting (40mcg). It is nice to not suffer from the side effects of oral pred. but I am still playing a balancing game with the pump setting. With me if we turn the pump up just a little I lose too much muscle tone and I am too weak to walk. I am currently doing P.T. to see if it will help. Jim

[davebahm]

Hey PigSnack,
I have used a walker since age 6 and am now 39. Being very stubborn, I plan to stay out of a wheelchair or scooter as long as possible. I took oral Baclofen several years ago for a couple of months, but all it did was make me sleepy, dizzy and unsafe to drive. I've had the pump for just over six months now, and though I am struggling with the weakness all over, it is very nice to be clear headed. My level started at 100 mcg and is now at 175. I'm not planning on any more increases anytime soon, but think I will ask to have the flow reduced at night so I can hopefully move around easier while I sleep and be able to get out of bed on my own without too much struggle. Like many, many things, getting out of bed was fairly easy until I got the pump. Now just about everything is a struggle.

Dave

This post has been edited by davebahm: 03 January 2007 - 04:22 AM

[PigSnack]

When I say I'm a walker I mean unaided. I can do it; I just have a clumsy gait and it hurts like hell. I step on people in the elevator... stuff like that. I'm not in a chair or have any other kind of sign around my neck, so people think I'm just an asshole not watching what he's doing. I have been trying to carry on with my life as if nothing happened since my injury and it's damned difficult. I'm trying to keep my high paying job. I'm doing my best to not give in to the chair or cart, but I'm losing. I'm fighting chronic fatigue along with 4 other chronic conditions related to my SCI. I just thought that maby a pump would get rid of some of the baclofen fog, but hard to say when under the cloud of handfuls of other meds.

Lately I feel like giving up and being disabled. I'm on the edge and it's f*@king with me big time. Those of you in chairs feel free to call me a pussy.

***Edit

OK... I'm done whining. What I am really asking is if a pump is generally only used for severe cases of spasticity or is it also appropriate for less severe cases like myself where if I am not medicated too much... I can still walk.

This post has been edited by PigSnack: 03 January 2007 - 11:24 PM

[wheeliebear75]

It's not being a "pussy". It is best to try and walk as much as you can...it may not seem like it but retaining some ability to walk is wonderful thing(atrophied muscles aren't). However so is being able to enjoy eating dinner with your family once you get home from work. I'm an L-2 incomplete and have a VERY LIMITED ability to walk with the assistance of forearm crutches. It's painfully obvious by the way I walk that there is something very wrong with me. If you were to walk with a cane it may be enough to let others know that there may be something other than being a jerk that caused you to step on/bump in to them (it's that sign everyone needs to see). And FYI the majority of persons using wheelchairs do have some ability to walk. As for the medications creating a fogbank in your head....I found a solution that works for me, but is controversial. I live in California in the US. Here there was a law passed that allows persons with certain medical conditions to use marijuana to help with thier symptoms. Ever since I was injured at 14, I've used to use muscle relaxers, heavy narcotics, and anti-nausea drugs several times a day for over a decade. Now I smoke pot; it works better on the neuropathy better than anything the Dr. gave. And there is no chance of vommiting it up. Now I'm not going to say that there is no chance of becoming addicted, nor am I saying that there won't be a small fogbank from marijuana. What I am saying is that for me the fogbank isn't as thick, and I didn't become addicted to morphine and the like, so I personally am not too worried. I still do take some milder narcotics but it is generally only at night or bad weather. I do NOT know how the law and/or courts view marijuana anywhere else.

PigSnack, on Jan 3 2007, 07:52 AM, said:

When I say I'm a walker I mean unaided. I can do it; I just have a clumsy gait and it hurts like hell. I step on people in the elevator... stuff like that. I'm not in a chair or have any other kind of sign around my neck, so people think I'm just an asshole not watching what he's doing. I have been trying to carry on with my life as if nothing happened since my injury and it's damned difficult. I'm trying to keep my high paying job. I'm doing my best to not give in to the chair or cart, but I'm losing. I'm fighting chronic fatigue along with 4 other chronic conditions related to my SCI. I just thought that maby a pump would get rid of some of the baclofen fog, but hard to say when under the cloud of handfuls of other meds.

Lately I feel like giving up and being disabled. I'm on the edge and it's f*@king with me big time. Those of you in chairs feel free to call me a pussy.

[Tarkus]

davebahm, on Jan 2 2007, 10:15 PM, said:

Hey PigSnack,
I have used a walker since age 6 and am now 39. Being very stubborn, I plan to stay out of a wheelchair or scooter as long as possible. I took oral Baclofen several years ago for a couple of months, but all it did was make me sleepy, dizzy and unsafe to drive. I've had the pump for just over six months now, and though I am struggling with the weakness all over, it is very nice to be clear headed. My level started at 100 mcg and is now at 175. I'm not planning on any more increases anytime soon, but think I will ask to have the flow reduced at night so I can hopefully move around easier while I sleep and be able to get out of bed on my own without too much struggle. Like many, many things, getting out of bed was fairly easy until I got the pump. Now just about everything is a struggle.

Dave

There are options other then a chair if you are a "walkie".

My doctors have advised that my "Drunk John Wayne" gait will catch up with me so I walk as much as I can then turn to technology:



The Segway has changed my life. Why sit if I can still stand.

Be Big,
Alan

[PigSnack]

>I live in California in the US. Here there was a law passed that allows persons with certain >medical conditions to use marijuana to help with thier symptoms.

My neurologist actually suggested it for neuropathic pain. I had a lot of experience with weed from way before my injury. I can't use it anymore because of the adverse psychological effects it now has. Besides, I can't use it while I work. I have been taking Neurontin for this type of pain. It seems to help a little.

I'm really impressed with chair bound people who maintain physical fitness. Even though I walk, I have become very deconditioned and don't move unless it's necessary. This is due to the pain and the meds making me weak.

[davebahm]

Alan, I like the standing device... very cool!

PigSnack, sorry that I misunderstood you about being a walker.

Wheeliebear, as far as smoking pot... I'd like to remain assured that I won't hit anyone or anything with my cars (one big advantage of the baclofen pump versus oral baclofen), keep my driver's license and remain at my job (plus be drug-free for my wife and stepsons). They have medical marijuana here in Colorado, and I've toyed with the idea and had some great jokes with my friends about it, but the thought of becomming a pothead to help my CP... no way.

Dave